Learning disabilities and autism:

A health needs assessment for children and adults in Cheshire and Merseyside

Jane Harris, Hannah Madden, Janet Ubido, Jane Oyston

January 2016

Centre for Public Health, Faculty of Education, Health and Community, Liverpool John Moores University, Henry Cotton Campus, 15-21 Webster Street,
Liverpool, L3 2ET | 0151 231 4506 | j.harris1@ljmu.ac.uk | www.cph.org.uk | ISBN: 978-1-910725-42-9 (web)
 Learning disabilities and autism:
A health needs assessment for children and
adults in Cheshire and Merseyside

Jane Harris, Hannah Madden, Janet Ubido, Jane Oyston

1
GLOSSARY

ASCOF: Adult Social Care Outcomes Framework data

ASC-CAR: Adult Social Care Combined Activity Returns data

CCG: Clinical Commissioning Group

CSU: Commissioning Support Unit

CWP: Cheshire and Wirral Partnership Trust

EHC: Education, Health and Care Plans

IAPT: Improving Access to Psychological Therapies

IHAL: Improving Health and Lives. The Learning Disability Observatory.

LA: Local Authority

Modelled data: By combining available evidence from different sources, modelling enables predictions of
future outcomes (Jacobs-van der Bruggen et al, 2009)

NHS IC: National Health Service Information Centre

PANSI: Projecting Adult Needs and Service Information System

PMLD: Profound and Multiple Learning Difficulty

QOF: Quality and Outcomes Framework (QOF) GP dataset.

Reasonable adjustments: All public sector services have a legal duty to provide reasonable adjustments for
people with learning disabilities in order to ensure equal access to services. These may include additional
support to make a service accessible, such as the provision of easy read information.

SAF: health self-assessment framework for learning disability services: involves specialist healthcare
professionals as well as people with learning disabilities and family carers in assessing local services.

School Action Plus: when the school is required to monitor the different or additional needs of a pupil.

School statement: used if the child’s needs are not met by the school action plus

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SUMMARY AND RECOMMENDATIONS ............................................................................................................ 5

RECOMMENDATIONS ................................................................................................................................................ 8

1. BACKGROUND ........................................................................................................................................ 13

1.1 Project Vision .......................................................................................................................................... 13

1.2 Definitions ............................................................................................................................................... 14
1.3 National policy ........................................................................................................................................ 17
1.4 National Reports and Guidance .............................................................................................................. 18
1.5 Health inequalities amongst people with learning disabilities ............................................................... 21

2. DEMOGRAPHY OF LEARNING DISABILITY AND AUTISM IN CHESHIRE AND MERSEYSIDE ........................ 23

2.1 Estimated prevalence and projections: learning disability ..................................................................... 23

2.3 Known prevalence aged 18+ (GP data): learning disability .................................................................... 40
2.4 Autistic Spectrum Disorder (ASD) ............................................................................................................ 42

3: HEALTH PROFILE ........................................................................................................................................ 49

3.1 DISEASE PREVALENCE AND ACCESS TO CARE ........................................................................................................... 49

Inequalities in access to care: ....................................................................................................................... 50
Merseyside and North Cheshire data on disease burden in primary care .................................................... 50
3.2 Health checks .......................................................................................................................................... 57
3.3 Screening ................................................................................................................................................ 61
3.4 Contraception and sex education ........................................................................................................... 65
3.5 Lifestyle ................................................................................................................................................... 66
3.6 Hospital admissions ................................................................................................................................ 67
3.7 Mental Health ......................................................................................................................................... 70
3.8 Challenging behaviour ............................................................................................................................ 74
3.9 Mortality and age at death. .................................................................................................................... 77

4: SOCIAL PROFILE ......................................................................................................................................... 81

4.1 Housing ................................................................................................................................................... 81

4.2 Community care ...................................................................................................................................... 91
4.3 Violence/ keeping safe/ social isolation .................................................................................................. 91
4.4 People with learning disabilities in the criminal justice system .............................................................. 96
4.5 People with learning disability who are parents ................................................................................... 102
4.6 Employment and benefits ..................................................................................................................... 106
4.7 Transport .............................................................................................................................................. 113

5. LEARNING DISABILITY SERVICE PROVISION AND USE ............................................................................... 115

5.1 TRANSFORMING CARE AGENDA ........................................................................................................................ 115

cheshire and merseyside ............................................................................................................................. 116
5.2 SERVICE PROVISION ........................................................................................................................................ 116
5 Borough Partnership ................................................................................................................................ 116
Cheshire and Wirral Partnership ................................................................................................................. 116
Mersey Care ................................................................................................................................................ 117
5.3 SERVICE USE ................................................................................................................................................. 117
MerseyCare ................................................................................................................................................. 118
Cheshire and Wirral Partnership (CWP) ...................................................................................................... 123

6. RECOMMENDATIONS............................................................................................................................... 129

REFERENCES................................................................................................................................................. 134

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APPENDICES................................................................................................................................................. 142

Appendix guidelines: care and management ............................................................................................. 142

Appendix 6 .................................................................................................................................................. 145

ACKNOWLEDGEMENTS AND AUTHOR DETAILS ............................................................................................ 146

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 SUMMARY AND RECOMMENDATIONS

People with learning disabilities and autism are a very diverse population, with differing needs and are
one of the most vulnerable groups in society, experiencing health inequalities, social exclusion and
stigmatisation.

Amongst those with more severe learning disabilities, there have been considerable life changes for
many, with the closure of learning disability hospitals (IHAL, 2012). Following the enquiry and reports
after the closure of Winterbourne View Hospital (DH, 2012) and the development of the government’s
‘Valuing People Now’ strategy (DH 2009), there are now clear guidelines in place covering all aspects of
the health needs of people with learning disabilities. Under the Disability and Equality Act (2010),
‘reasonable adjustments’ are required in all practices and procedures to ensure that discrimination
against people with learning disabilities does not occur.

This health needs assessment for learning disabilities and autism amongst adults and children covers
Cheshire and Merseyside (Halton, Knowsley, Liverpool, Sefton, St Helens, Warrington, Wirral, Cheshire
East, Cheshire West and Chester). It tries to determine the health and wellbeing needs of people with
learning disabilities and autism living in Cheshire and Merseyside. The findings have been used to develop
a set of recommendations for local commissioners.

Due to the availability of data, the health and social profile sections of this report have focussed more on
learning disability than autism.

How many people have learning disabilities and autism across Cheshire and Merseyside?

It is important to consider the hidden population with learning disability – those not using services with
potentially unmet needs. This is because although about 4.6 people per 1,000 in the population are
known to have a learning disability, research suggests there may actually be around 20 people in every
1,000 with a learning disability.

There is no routinely collected data on the number of children with learning disabilities. We do know how
many children locally have been identified as having a learning difficulty. It has been estimated that just
over three and a half children in every 1,000 has a severe learning difficulty. Those classified as having a
severe learning difficulty may well have a learning disability but we cannot say this for certain. The
number of adults with learning disabilities known to GPs is broadly similar to the numbers local
authorities have on their registers. However, there is a lot of variation in GP figures across practices and
self-assessment framework (SAF) data does not always give an indication of the total population. There
are far fewer people known to these services than we estimate live in our local communities. This means
significant numbers are not receiving any help. In Cheshire and Merseyside, there are an estimated
35,896 people with a learning disability aged 18 and over, but there are only 7,775 who are known to
services (2014/15). There is no data available on the numbers actually known to have profound and
multiple learning disabilities (PMLD).

We estimate there are about 2,267 children and 14,582 adults in Cheshire and Merseyside with autism.
We do not know how many of these have Asperger’s syndrome, although data from two specialist NHS
providers (Mersey Care and Cheshire and Wirral Partnership) reported just under 580 Cheshire and
Merseyside residents with a diagnosis of Asperger’s on their caseloads in 2015.

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Health of people with learning disabilities and autism

People with learning disabilities face a number of challenges in using health services. These include
understanding literature they have been given, keeping appointments and following treatment regimes.
It is important that people who provide healthcare can identify when a person has a learning disability or
autism so they can make ‘reasonable adjustments’ to their care.

People with learning disabilities tend to be less physically active and a higher proportion of them are
obese compared to the general population. Local BMI information is limited which makes comparison to
the local population difficult. However, high proportions of adults with learning disabilities do seem to be
obese with the proportion in each local authority ranging from 34% in Cheshire East to 53.7% in
Knowsley; this compared to an England average of 24%. Information on other co-morbidities is not
routinely collected/reported with few areas able to provide details on additional diagnoses amongst
people with learning disabilities. However rates of some conditions appear to be high including;

 Epilepsy – rates are high locally and nationally research shows epilepsy is at least 20 times higher
amongst those with learning disabilities than for the general population.
 The other most common additional health conditions were asthma (four out of seven LAs which
provided data) and dysphagia (difficulty swallowing; three out of seven which provided data).
Coronary heart disease was the most common co-morbidity in one local authority which report
7.7% of people with learning disabilities in the area having CHD.

Local data on mortality of people with learning disabilities was very limited with the only data available
coming from the LDSAF. However, this only included number of deaths in the previous 12 months and
any values under 5 were supressed. Therefore total number of deaths in each LA is not available. No
causes of death or age at death were available.

Detailed hospital admissions data was not available from HES within the timeframe of this report and is
no longer available on IHAL; however previous research has shown that the proportion of admissions to
general hospital which happen as an emergency are substantially larger than for people who do not have
learning disabilities (50.0% vs. 31.1%) (IHAL, 2013).

As well as lifestyles, another major reason for poorer health could be worse access to health promotion
and early treatment. The health checks that are available either help to prevent people from developing
illnesses or treat them early to make it easier and more likely to recover. Cheshire and Merseyside as a
region is performing substantially better than the England average on uptake and practice participation
of health checks.

Screening data were available from most areas and shows a similar pattern to national research
including:

 High rates of people with learning disability refuse or do not attend cervical cancer screening,
compared to the population of all eligible women.
 Screening uptake for breast cancer was lower in women with learning disabilities compared to all
eligible women; though higher than cervical cancer screening uptake.
 Bowel cancer screening varied between local authorities and in some areas was higher amongst
people with learning disabilities compared to the general eligible population.

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Information on uptake of contraception and sex and relationships education (SRE) for people with
learning disabilities was limited. National research has shown that SRE needs to be improved for people
with learning disabilities.

Social issues for people with learning disabilities and autism

People with learning disabilities do not just face challenges with healthcare. Many live in poverty and are
unable to secure employment. National research suggests only 15% of people with autism are in full-
time employment and only 7% of people with a learning disability are in either part-time or full-time
employment. Locally, all areas apart from Cheshire East and St Helens, have below the national average
levels of employment for people with learning disabilities. The wide variation in employment locally
suggests there may be different definitions of work being used and even disincentives to count people as
having jobs as they would be removed from local authority registers if this was the case.

National research has shown many local authorities believe the type of housing people with learning
disability and autism are in does not meet their needs. Although the levels in ‘settled accommodation’,
across Cheshire and Merseyside are generally high, this does not tell us about the quality and suitability
of their accommodation.

National research also shows that people with learning disabilities and autism are at increased risk of
becoming victims of violence and abuse. Local data shows the number of people with learning disabilities
referred to social services safeguarding teams is higher than the regional and national average in seven
out of nine local authorities.

The estimated proportion of people in prison who have learning disabilities or learning difficulties that
interfere with their ability to cope with the criminal justice system is around 20-30%. Many are
unidentified.

Many people with learning disabilities and autism have little or no contact with friends. One research
study found that 31% of adults with a learning disability having no contact with friends, compared to 3%
of adults without a learning disability.

Six out of 10 women with learning disabilities who become a parent have their children taken in to care.
Data available on parental status is limited but the available data suggests that numbers of parents are
small in each local authority, roughly 10-30 in each area. However, they are likely to have complex and
on-going support needs.

Service Use and Provision

There are three NHS providers; Mersey Care, Cheshire and Wirral Partnership (CWP) and 5 Boroughs
Partnership, providing both community based and inpatient specialist care for people with learning
disabilities.

Two of three providers (Mersey Care and Cheshire and Wirral Partnership) supplied data for this needs
assessment. Each provider had between 1,500 and 2,000 individuals with learning disabilities on their
caseload in 2015. The client profile reflected the demographics of those known to Local Authorities and
CCGs with the majority being male, white and aged between 21 and 60 years old. The largest proportion
of referrals were made by GPs.

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The number of mean learning disability inpatient days per patient per year at Mersey Care and CWP were
12.5 and 18 days respectively with Mersey Care seeing a rise in the number of mean patient days and
CWP seeing a decline. There were approximately 30,000 contacts per provider in 2014/15 of which two
thirds were face to face and just under one in ten were unsuccessful; unsuccessful contacts include DNAs,
appointments that were cancelled by the patient or provider and instances where the patient declined.

RECOMMENDATIONS

Recommendations resulting from the findings of this report and relevant identified guidelines are
presented here. All the recommendations are aimed at ensuring that reasonable adjustments for people
with learning disabilities and autism are carried out in order to ensure equal access to services, as
required by the Disability and Equality Act 2010:

Empowering individuals

1.1 Ensure that people with learning disabilities in each local authority and CCG in Cheshire and
Merseyside have the opportunity to contribute to needs assessments and the development of services.
This is the second needs assessment produced across the two counties but it is vital that the data and
evidence presented here is triangulated with insights from those living with a learning disability and/or
autism.

1.2 Demonstrate that people with learning disabilities and autism, families and carers are involved in the
process of planning and decision making, so that their needs, choices and preferences are understood,
and services are available to reflect individual choice (IHAL, 2012).

1.3 The needs of people with learning disabilities and autism should be reflected in JSNAs (Joint Strategic
Needs Assessments).

1.4 Review the quality of housing for people living with learning disabilities including those who are living
with family. The proportion of adults with learning disabilities in Cheshire and Merseyside living in their
own home is above the national average but there is little indication of housing quality.

1.5 Ensure young people with learning disabilities have access to high quality sex and relationship
education including raising awareness of sexual exploitation and healthy relationships.

1.6 Ensure that all services are actively working to reduce social isolation among people with learning
disabilities by signposting and referring to community and third sector organisations and leisure activities.

1.7 Where a parent has a learning disability or autism, enable children to live with their parents (if this is
consistent with their welfare) by providing the support that they and their families need (DH and DfES,
2007). This would include ensuring equal access to services, such as parenting support and information
services and support through any court processes.

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Right Care in the Right Place

2.1 Ensure strong partnership and collaborations are in place between Local Authorities and Clinical
Commissioning Groups to ensure that people with a learning disability have access to information,
advocacy, support and care as and when they need it.

2.2 Enable the pooling of resources to support and assist people held in secure accommodation to return
back to community placements (where appropriate) in their home borough.

2.3 Ensure care managers and commissioners of packages of support consider what assistive technology
and telecare (AT&T) can do as part of a package of support (Beyer et al, 2008). Ensuring that all AT&T
plans include measures to alleviate social isolation.

2.4 Introduce routine screening for learning disability in prison and make reasonable adjustments and
develop easy read information to ensure prisoners with learning disabilities understand prison routines.

2.5 Ensure that the needs of people with learning disabilities and autism are reflected in contracting for
Improving Access to Psychological Therapies (IAPT). ‘Reasonable adjustments’ would include the
provision of longer sessions than usual, to take account of the person’s varying levels of understanding
and need (DH, 2009a).

2.6 Continue to promote annual health checks for people with learning disabilities at GPs and people with
learning disabilities, with a 90% uptake rate target (IHAL, 2012).

2.7 CCGs should work with Public Health England to ensure appropriate support is offered to individuals
with a learning disability and/or autism to improve access to screening programmes. This should tackle
issues around reasons for high refusal and non-attendance (DNA) rates and would include the provision
of ‘easy read’ materials.

2.8 Ensure that the performance of each acute provider Trust is monitored against quality indicators
which relate to the needs and experiences of patients with learning disabilities and autism.

2.9 Focus prevention strategies on areas where deaths are more avoidable, such as aspirational
pneumonia, seizures, heart disease and accidental deaths (Tyler and McGrother, 2009).

2.10 Notify the GP and the community learning disabilities team when a patient with learning disabilities
or autism is discharged after having being admitted with an Ambulatory Care Sensitive Condition (i.e. a
condition which shouldn’t need hospital care).

Workforce Development

3.1 Introduce accessible information and offer support to ensure equal access to all health and social
services. Remove physical barriers to access and make whatever alterations are necessary to policies,
procedures, staff training and service delivery to ensure that they work equally well for people with
learning disabilities, including:
3.1.1 Making all self-help and service information ‘easy to read’.
3.1.2 Ensuring support is available where required, for example in housing application processes.
3.1.3 Providing appropriate staff awareness training across all services. This will help to tackle the
issues around reasons for high refusal and non-attendance (DNA) rates for example in
screening.

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3.2 Ensure that health service agreements (school nurses and health visitors) on identifying those with a
learning disability and/or autism are built into tendering arrangements with schools and colleges.

3.3 Improve awareness among individuals, learning disability and criminal justice professionals the
process for reporting disability related hate crime.

3.4 Provide training for those who work in the criminal justice system including police, court and custody
suite staff on recognising, approaching, communicating and interviewing/questioning those with learning
disabilities and autism.

3.5 Strengthen collaboration between adult and children’s services to ensure that the needs of parents
with learning disabilities and their children are being met.

3.6 Consider developing sex and relationships policies in schools and services for children and adults with
learning disabilities and autism, to include staff training. This needs to be collaborative with CCGs so
healthcare staff can raise the issue and support people with appropriate contraceptive and sexual health
advice.

3.7 Explore the possibility of using newly available disability hate crime statistics to help to identify
problems relating to this issue (from the Merseyside Police SIGMA unit).

3.8 Improve employer awareness to support people with learning disability and autism in the workplace.
Use simple adjustments like making job interviews more accessible and providing assistance to
understand the ‘unwritten rules’ of the workplace (Broad, 2007).

3.9 Provide better transport solutions for people with learning disabilities and autism, organised by
councils, charities and communities in partnership, including increasing public and driver awareness of
learning disabilities and autism and improving acceptance of disabled people on public transport.

3.10 Ensure healthcare staff are trained to raise sexual health issues with people who have learning
disabilities and autism and to support them with appropriate contraceptive and sexual health advice (see
2.5 above).

3.11 Ensure there is a senior person identified in each acute hospital Trust with responsibility for patients
with learning disabilities and autism (possibly an acute liaison nurse) and that this individual puts in place
reasonable adjustments to meet the specific needs of such patients.

3.12 Ensure provider organisations, families and carers have easy access to specialist support, assessment
and intervention services from multi-disciplinary team to support any issues with challenging behaviour.

Data

Ensure that collection of all health and social care data relating to learning disabilities and autism
becomes more co-ordinated and systematic:

Definitions

4.1 Challenging behaviour: Agree on a standard definition across the region and maintain a register of
those with challenging behaviour (DH, 2012). Use the register to enable the development of appropriate
jointly commissioned local services for people who challenge.

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4.2 Learning disability among children: introduce standard definition and collection of data on children
with learning disabilities rather than relying on numbers with learning difficulty (as reported in the School
Census). Liverpool City Council’s work on producing a single dataset for children and young people will
assist in this.

4.3 Asperger’s: Ensure that data on Asperger’s from Local Authority, GP practice and provider captures
those with a primary and secondary diagnosis of Asperger’s and allows for the identification of those with
a diagnosis of learning disability and Asperger’s who are not eligible for Specialist Autism Services.

Monitoring and Quality

4.4 Ensure that local authority and GP information systems across Cheshire and Merseyside allow for the
collection of comparable data which can be shared across organisations to allow the needs of the
population with learning disabilities and/or autism to be truly quantified.

4.5 Ensure GP information systems record data separately on numbers with learning disabilities, autism
and Asperger’s syndrome and profound and multiple learning disabilities (PMLD), for age groups under
18, 18-64 and 65 plus, and by ethnic group and gender.

4.6 Develop the use of GP clinical systems so that data on lifestyle, screening and disease management
for those with learning disabilities and autism can be monitored and compared across each area and with
the general population.

4.7 In consultation with providers, develop a routine dataset specification for use in JSNAs, needs
assessments and to inform planning and policy across Cheshire and Merseyside. This should include
standard terms and definitions across the three providers (as detailed above) to allow for easy and timely
extraction of data to inform decision making.

4.8 Parental status: improve the recording of parental status among adults with learning disabilities
across GP practice, local authority and providers so that the needs of parents can be catered for including
through joint working between health and social care and maternity services.

4.9 Improve reporting of accommodation status at both LA level and across NHS organisations to ensure
individuals’ needs are recognised and all adults with learning disabilities have access to the level and
quality of support they need.

4.10 Carry out local monitoring to identify potentially avoidable hospital admissions amongst those with
learning disabilities and autism.

4.11 Within hospital IT systems ensure the identification and coding of people with learning disabilities
and autism and the ability to track episodes of care and an individual's movement within a hospital trust,
including which specialities/departments have been required.

4.12 Across all local authorities, ensure consistency of definitions and recording of numbers of people
with learning disability and autism in employment.

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4.13 Make data available on numbers of people with learning disability and autism accessing
psychological therapies, so that access can be monitored.

4.14 Further investigate the needs of people with autism as data collection improves and consider a
separate needs assessment for autism and Asperger’s which uses engagement with service users and the
wider population with autism and Asperger’s to address some of the gaps in data.

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 FULL REPORT

1. BACKGROUND

People with learning disabilities and autism are one of the most vulnerable groups in society,
experiencing health inequalities, social exclusion and stigmatisation. In general, those with learning
disabilities have greater and more complex health needs than the general population, and often these
needs are not identified or treated (Weston et al, 2012).

The life expectancy of those with learning disabilities is shorter than the general population, though this
has increased in recent years (Emerson et al, 2012). In addition a number of national reports have
highlighted that adults with learning disabilities often experience barriers to accessing healthcare services,
and poor levels of care. Adults with learning disabilities are more likely to die from a preventable cause
than the general population (Tyrer and McGrother, 2009).

Patterns of health need amongst those with a learning disability are different to the general population,
and therefore current programmes that target health inequalities may exclude this population group
(Emerson et al, 2012).

The Centre for Public Health, Liverpool John Moores University (LJMU) was commissioned by NHS
England to deliver this rapid health needs assessment for learning disabilities and autism amongst adults
and children for the nine local authority areas across Cheshire and Merseyside.

1.1 PROJECT VISION

The needs assessment should inform NHS England’s Transforming Care (NHS England et al, 2015) work
programme in Cheshire and Merseyside. In addition, this report can be used to inform each area`s Joint
Strategic Needs Assessment and the future commissioning priorities and intentions for local authorities
and NHS Commissioners with regard to people with learning disabilities and people with autism.

AIMS

 To determine the health and wellbeing needs of people with learning disabilities and autism
living in Cheshire and Merseyside
 To provide accurate data to help inform the Transforming Care work programme for Cheshire
and Merseyside
 To make a set of evidence-based recommendations for local commissioners, within the
framework provided by a recent Commissioning Guide (IHAL, 2012).

OBJECTIVES

• Assess existing evidence on the health and wellbeing needs of people with learning disabilities and/or
autism.

• Analyse quantitative data from available sources relevant to the health and wellbeing needs of people
with learning disabilities and autism health in Cheshire and Merseyside.

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• Describe key characteristics of the population with learning disabilities and autism in Cheshire and
Merseyside relevant to commissioning health and social care services.

• Detail available data on service provision and use from local NHS providers of learning disabilities
services.

• Identify priority health, care and wellbeing issues, barriers to accessing services and barriers to
delivering services for people with learning disabilities and autism in Cheshire and Merseyside.

• Make recommendations for better addressing the health, care and wellbeing needs of people with
learning disabilities and autism across Cheshire and Merseyside, within the framework provided by
the Commissioning Guide – but also highlighting areas that exceed the guidance (i.e. best practice).

METHODS

For this needs assessment, estimates of the expected number of people with learning disabilities and
autism have been taken from the Learning Disability Observatory ‘Improving Health and Lives’ website
(IHAL) and the PANSI website (Projecting Adult Needs and Service Information system). Data on those
known to services, where available, has been taken from the NHS Information Centre (numbers reported
by social services), GP QOF data and directly from each local authority, Clinical Commissioning Group and
NHS England. Data on service use and provision has been accessed directly from the three providers
across Cheshire and Merseyside (Cheshire and Wirral Partnership, Mersey Care and 5 Boroughs
partnership).

1.2 DEFINITIONS

HEALTH NEEDS ASSESSMENT

As described in the NHS Merseyside Guide (McAteer and Du Plessis, 2012), health needs assessment
(HNA) is a systematic method for reviewing the health needs and issues facing a given population, leading
to agreed needs (priorities) for that population. HNA is a more in depth analysis of need than that
provided by Joint Strategic Needs Assessments. The starting point in HNA is a defined population. This
population can be defined in a number of ways, which in this case is the experience of learning disability
or autism. This HNA will use an epidemiological approach, which includes an examination of available
information on incidence and prevalence in order to assess need.

LEARNING DISABILITY

For the purposes of this needs assessment, the definition of learning disability will be that used in the
white paper ‘Valuing People Now: A New Strategy for Learning Disability for the 21st Century’ (DH, 2001).
This white paper formed the basis of the government paper ‘Valuing People Now: A new three-year
strategy for people with learning disabilities’ (DH, 2009). In the ‘Valuing People’ definition, the term
‘learning disability’ includes the presence of:

 A significantly reduced ability to understand new or complex information, to learn new skills
(impaired intelligence), with;
 A reduced ability to cope independently (impaired social functioning); which started before
adulthood, with a lasting effect on development.

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The definition covers people with autism who also have learning disabilities, but not those with a higher
level autistic spectrum disorder who may be of average or even above average intelligence. ‘Learning
disability’ does not include all those who have a ‘learning difficulty’ which is more broadly defined in
education legislation.

Learning disabilities are usually detected from childhood and can result from a number of causes such as
genetics, chromosomal abnormalities or environmental factors. Sometimes there is no known cause for a
learning disability (About Learning Disabilities, online A).

Learning disabilities are different to learning ‘difficulties’ like dyslexia, which do not affect intellectual
ability (NICE, 2013). However, the report of the first national survey of adults with learning disabilities in
England (Emerson et al, 2005) used the term 'learning difficulties' rather than 'learning disabilities'. This
was because these are the words that the people themselves said they prefer. It was used throughout the
research for people who since they were a child had a real difficulty in learning many things. It did not
include people who just have a specific difficulty in learning, for example dyslexia.

Coding in datasets

Learning disability is divided into four main categories: mild, moderate, severe and profound. The World
Health Organisation International Classification of Diseases (ICD) for learning disability is shown in Table 1.

Table 1: Learning disability classification

IQ Levels ICD Code
Mild 50-69 F70
Moderate 35-49 F71
Severe 20-34 F72
Profound <20 F73

source: DWP website http://www.dwp.gov.uk/publications/specialist-guides/medical-conditions/a-z-of-medical-

conditions/learning-disability/classification-ld.shtml

Additional ICD categories are ‘other’ (F78) and ‘unspecified’ (F79), characterised with reference to IQ
levels, mental ages and broad descriptive characteristics. An additional qualifier is also available to
indicate the presence or absence of ‘impairment of behaviour requiring attention or treatment’ (Glover
and Emerson, 2012). The ICD 10 F70-79 group of conditions is termed ‘mental retardation’, which is
considered outdated and offensive. Proposed revisions are outlined by Glover and Emerson (2012).

Since March 2011, new minimum datasets from the NHS Data Standards Board have included a question
about the presence of disability. Glover and Emerson (2012) note that the disability question was
included in the dataset for the new Improving Access to Psychological Therapy (IAPT) services.

Glover and Emerson (2012) point out two defects in the disability question:

 It does not identify whether individuals have a continuing impairment in the way that the
definition of disability in the Disability and Equality Act (2010) requires.
 It provides a classification in which neither learning disability nor autism can be satisfactorily
identified as discrete categories.

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At present the disability question and the ICD are the only two approaches to recording disability
statistically for which the NHS has standardised methods (Glover and Emerson, 2012).

AUTISTIC SPECTRUM DISORDER (ASD)

Autistic spectrum disorder (ASD) is a lifelong condition characterised by impairments in three main areas:
social interaction, communication and the presence of repetitive behaviours (known as the triad of
impairments). The term “spectrum” is used due to the significant variations between individual cases,
including severity and presentation of the triad of impairments; differing IQ levels; and general functional
abilities. Autistic Disorder, Asperger’s Syndrome and High Functioning Autism are all types of Autistic
Spectrum Conditions (National Autistic Society, 2013).

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1.3 NATIONAL POLICY

There have been a number of recent developments in policies relating to people with learning disabilities.
The most important of these, with related literature, are listed as follows (Bean, 2012):

Disability and Equality Act 2010 and Reasonable Adjustments

Since the Disability and Equality Act 2010, disabled people have important rights of access to everyday
services (Directgov). Service providers are now obliged to make reasonable adjustments to premises or to
the way they provide services. Access to services is not only about physical access, it is about making
services easier to use for everybody, for example longer appointment times and more accessible health
promotion information.

Valuing People

The ‘Valuing People’ white paper (DH, 2001) formed the basis of the recent government paper ‘Valuing
People Now: A new three-year strategy for people with learning disabilities’ (DH, 2009).

Valuing People recognises that people with a learning disability are amongst the most vulnerable and
socially excluded in our society. The strategy set out new opportunities for children and adults with a
learning disability and their families and called for action to reduce health inequalities and discrimination.
It has six priority areas:

 Disabled children and young people

 More choice and control for people with a learning disability
 Supporting carers
 Improving health for people with a learning disability
 Housing, fulfilling lives and employment
 Quality services

Valuing People Now (DH, 2009) set out the Government’s strategy for people with learning disabilities. It
also responds to the main recommendations in ‘Healthcare for All (DH, 2008), which was an independent
inquiry set up after the publication of ‘Death by Indifference’ (Mencap 2007).

Care Act (2014):

“The Care Act (2014)” built upon recent reviews and reforms (outlined below) and replaced numerous
existing laws with a single approach to adult social care in England. The key focus of the act is the
statutory principle of individual wellbeing and aims to achieve: clearer and fairer care and support;
physical, mental and emotional wellbeing of both the individual needing care and their carer; preventing,
reducing and delaying the need for care and support and, putting people in control of their own care.

The Act places a requirement and duty on all Local Authorities to: collaborate and integrate with other
public authorities (e.g. housing, health); to ensure that information, advice and independent advocacy is
available to all when they need it; to provide people with a choice of diverse and high quality care
providers and ensure no vulnerable person is left without the care they need; and, outlines a new
statutory safeguarding framework.

The key processes of the act are firstly, that anyone who appears in need of support is entitled to an
outcomes focused assessment and the local authority must apply a national eligibility threshold to

17
determine individual needs. Secondly the local authority must undertake a financial assessment where
the type of care being considered is chargeable with deferred payments offered by April 2015 and a care
account to set out the accumulated costs towards an individual’s cap on care set out by April 2016. Lastly,
a care and support plan must help an individual decide how the resources needed to meet their
individual needs and this plan must be reviewed regularly.

1.4 NATIONAL REPORTS AND GUIDANCE

A number of high profile reports have been published in relation to the health of people with learning
disabilities:

Mansell Report and Transforming Care (challenging behaviour and autism)

The ‘Mansell Report’ Services for people with learning disabilities and challenging behaviour or mental
health needs (DH, 2007a) set out the Department of Health’s recommendations for designing effective
services to support people with challenging behaviour and/or autism. It concluded: ‘specialist multi-
disciplinary support teams focussed on challenging behaviour are an essential component of modern
provision’.

The wellbeing of people with learning disabilities who show challenging behaviours has attracted
increasing attention following the investigation of serious abuse at Winterbourne View. The resulting
government report, ‘Transforming Care’, set out a programme of action to transform services, so that
vulnerable people no longer live inappropriately in hospitals and are cared for in line with best practice
(DH, 2012b).

Transforming Care: Next Steps

“Transforming Care for people with learning disabilities –next steps” (NHS England et al, 2015) is the
latest report from NHS England and the Local Government association which builds upon the agenda set
out in the original “Transforming Care” programme to drive system wide change and enable more people
with learning disabilities to live in the community with the right support (DH 2012b). The programme
focuses on five key areas, namely: empowering individuals; the right care in the right place; workforce
development; regulation and inspection and, data.

The report was accompanied by “Building the Right Support” which outlined the national plan to develop
community services and close inpatient facilities for people with a learning disability (NHS England et al,
2015a) and a service model (NHS England, 2015b) for the 49 Transforming Care Partnerships across
England with the aim of reshaping local services and meeting individual needs.

Winterbourne View- Time for change and Time is Running Out

The Transforming Care next steps report was informed by the Winterbourne View- Time for Change
(Acevo, 2014) in which NHS England asked Sir Stephen Bubb to make recommendations of a national
commissioning framework for community based support for people with learning disabilities following
the low levels of change actioned following the Winterbourne View scandal.

The independent review outlines two broad areas for change: firstly, putting in place community based
support to safely discharge individuals currently in inpatient settings and secondly, supporting adults,
young people and children in the community to prevent admissions. The recommendations covered
strengthening rights, forcing the pace of commissioning, closure of inpatient institutions, building
capacity in the community and holding people to account.

18
A second review, published six months after Transforming care: next steps¸ acknowledged that NHS
England had made improving outcomes for people with learning disability a key strategic priority, but
suggested that the pace of change had been too slow. The review identified two key areas where
progress had been insufficient. Firstly, the issue of leadership with little being communicated to key
stakeholders on how transformation will actually be achieved and a need to focus on equal partnership
between providers, individuals and stakeholders. Secondly, despite promised closure programmes for
inpatient services, little has been done to build capacity for community provision.

No voice unheard, no right ignored

In March 2015, the government launched a consultation paper (DH, 2015) which sought views on
strengthening the rights of people with learning disabilities, autism and mental health issues to enable
them to live independently. The resulting government response (DH, 2015b) highlighted that while some
progress towards the transforming care agenda had been made, this approach and the resulting health
outcomes varied considerably across the country. It considered three phases which looked at early action
to sustain current momentum, longer term changes including legislation and more radical solutions to
longer term issues.

Six Lives

Six Lives: the provision of public services to people with learning disabilities – the Health Service
Ombudsman and Local Government Ombudsman (2009) published a joint report, based on findings from
their investigations in response to complaints brought by Mencap following publication in October 2007
of their report Death by Indifference (Mencap, 2007). This report outlined case studies of six people with
learning disabilities who Mencap believed died unnecessarily as a result of receiving a lower standard of
healthcare than afforded to the general public. The report prompted an independent inquiry into access
to healthcare for people with learning disabilities, ‘Healthcare for All’ which reported in July 2008 (DH,
2008).

Strategic plan 2010-2015

The Strategic plan 2010-2015 – position statement and action plan for learning disabilities, CQC (Care
Quality Commission, 2009) sets out early thoughts of the CQC about an approach to ensure not only that
services for people with learning disabilities reach basic standards of quality and safety, but also improve.
It provides some priority actions for CQC to take to ensure that, working with others, they can make a
difference to services for people with learning disabilities.

The report outlines three key areas for improvement, which are:

 Ensuring that the care of people with learning disabilities becomes more person-centred,
including a greater focus on person-centred plans.
 Ensuring that people with learning disabilities receive care that is safe.
 Improving the commissioning of services for people with learning disabilities.

National study – Specialist inpatient learning disability services

National study – Specialist inpatient learning disability services – Follow-up audit of services 2008/09
(Care Quality Commission, 2009a) sets out the findings and subsequent recommendations from an audit
of 43 services across 37 organisations between September 2008 and January 2009 – which was a follow-

19
up to the audit conducted in 2007. The inspections conducted with the 43 services found ‘…that the
quality of specialist healthcare services for people with learning disabilities is at best inconsistent and at
worst damaging…’.

Commissioning Specialist Adult Learning Disability Health Services

Commissioning Specialist Adult Learning Disability Health Services (DH, 2007) details good practice
guidance on the commissioning of specialist learning disability health services for adults, in particular to
assist in responding to shortcomings identified in these services in recent Healthcare Commission reports
including those into abuse in Cornwall and Merton and Sutton. It included recommendations relating to
offenders with learning disabilities, in particular to carry out health screening to identify those in prison
who have learning disabilities and the health needs they may have and to provide links to community
learning disability teams.

Commissioning guidance

The recently published commissioning guidance for Clinical Commissioning Groups (IHAL, 2012) has been
written for CCGs to assist them to:

• Commission high quality, cost effective general and specialist health services for people with
learning disabilities;

• Jointly commission services for people who challenge services and those with complex needs;

• Work with Local Authorities and others to address the social factors which adversely affect the
health of people with learning disabilities.

Fulfilling and rewarding lives

Fulfilling and rewarding lives (DH, 2010) is Statutory Guidance that focuses on the seven areas required
by the Autism Act 2009, in each case identifying what health and social services bodies are already
expected to do, and then setting out any additional requirements introduced by the strategy. The
additional requirements are focused on achieving two key outcomes:

 improving the way health and social care services identify the needs of adults with autism,
and
 ensuring identified needs are met more effectively to improve the health and wellbeing of
adults with autism.

Raising our sights

In the consultation for ‘Valuing people now’, concerns were raised that needs were not sufficiently being
addressed for adults with profound intellectual and multiple disabilities. ‘Raising our sights: services for
adults with profound intellectual and multiple disabilities’, by Professor Jim Mansell (DH, 2010a)
responded to these concerns. The report called for the wider development of personalised services for
people with profound and multiple learning disabilities (PMLD).

Equal Treatment Closing the Gap

The Disability Rights Commission publication ‘Equal Treatment Closing the Gap’ (DRC, 2006) is based on
an investigation which established that people with learning disabilities are less likely to receive some of
the expected evidence-based checks and treatments.

20
An Enhanced Service (ES) is currently in place to support the provision of health checks. The Direct ES
only includes those known to social services, but some areas have offered health checks to everyone on
the Quality Outcomes Framework (QOF) register (NHS England, 2013).

1.5 HEALTH INEQUALITIES AMONGST PEOPLE WITH LEARNING DISABILITIES

Health inequalities are differences in health status between different groups of the population. A report
by IHAL1 on health inequalities noted that the poorer health status of people with learning disabilities
compared to the general population has been widely recognised (Emerson et al, 2012). These differences
in health status are acknowledged to be often avoidable, representing health inequalities, which those
with learning disability face from an early age. The inequalities often result from barriers faced in
accessing health care. Patterns of healthcare provision for people with learning disabilities are likely to be
in contravention of legal requirements under various acts of parliament, including the Disability and
Equality Act 2010 (Emerson et al, 2012).

Mortality

A study by Tyrer and McGrother (2009) found mortality rates amongst people with moderate to severe
learning disabilities to be almost three times higher than in the general population. They noted that it is
not possible to say how many of these deaths would be unexpected, as people with learning disabilities
often have significant comorbidity, such as physical impairments, congenital heart malformations and
mental disorders, which all incur a greater risk of death. However, this would not explain all the
difference.

Morbidity

A report by Emerson et al (2012) summarised the literature on inequalities in health status faced by those
with learning disabilities. Some examples are as follows:

 Amongst children with learning disabilities, 36% have psychiatric disorders, compared to 8%
amongst children with no learning disability.
 Between 10%-15% of people with learning disabilities have challenging behaviours (including
aggression, destruction and self-injury).
 The risk of epilepsy is at least 20 times higher amongst those with learning disabilities than for
the general population. The NHS Information Centre study into access to healthcare found that,
of all people with epilepsy, those with learning disability had higher rates of seizures (NHS IC,
2010). It was noted that patients with learning disability and epilepsy often have many different
seizure types, which may be more difficult to treat.

Social determinants and individual lifestyle factors

The Marmot review recognised that health inequalities are the result of an interaction of a range of
different factors, including housing, poverty, employment, education, social isolation and disability, all of
which are strongly affected by economic and social status (Marmot, 2010). These social determinants of
health can influence lifestyle factors (for example leading to poor diet) and are related to other factors
such as stigma and bullying, all of which can have a negative impact on health and wellbeing. People with
learning disabilities are at increased risk of disadvantage relating to the social determinants of health.

1
IHAL: Improving Health and Lives; Learning Disabilities Observatory

21
Across England, there are significant variations in total NHS expenditure and expenditure per person on
specialist services for those with learning disabilities, indicating health care inequalities between areas
(Emerson et al, 2012).

Further details relating to health and social inequalities for those with learning disabilities can be found in
Section 3 (Health Profile) and Section 4 (Social Profile) of this report.

22
 2. DEMOGRAPHY OF LEARNI NG DISABILITY AND AUTISM IN CHESHIRE AND MERSEYSIDE

Age, sex, deprivation and ethnic group

Learning disability and autism have some associations with age, gender, ethnicity and deprivation,
identified by Emerson and Baines (2010) as follows:

 Age: Due to the reduced life expectancy of people with learning disabilities, learning disabilities
are significantly more prevalent in younger adult age groups. As a result, areas with younger
demographic profiles would be expected to have an increased number of adults with learning
disabilities and autism.
 Gender: Of those known to services, learning disability appears to be more prevalent amongst
men.
 Ethnicity: Severe learning disabilities are more common among Pakistani and Bangladeshi
children. As a result, areas with higher proportions of young Pakistani and Bangladeshi adults
would be expected to have an increased number of adults with learning disabilities and autism.
 Deprivation: Learning disabilities are more common in poorer households and less severe
learning disabilities are also more common in poorer communities. As a result, more socially
deprived areas would be expected to have an increased number of adults with learning
disabilities and autism. However, this effect may not be particularly pronounced as autism is less
common among people with less severe learning disabilities.

Difference between known and true prevalence (i.e. met and unmet need)

Amongst children, although having a moderate or severe learning ‘difficulty’ does not always imply a
learning ‘disability’, the likelihood is that for the majority, this will be the case. Nationally, there is a large
difference between the estimated prevalence of moderate or more severe learning difficulties in schools
(around 24.5 per 1,000) and those adults estimated by GPs and adult social services to have learning
disabilities (4.3 per 1,000). This would suggest that for those recognised in schools as having a moderate
or severe learning difficulty, many will develop into adults with a learning disability that is unknown to
their GP and will not be known by the hospital if the individual requires a hospital visit (Emerson and
Baines, 2010). There is further discussion of this issue in Section 2.2.

2.1 ESTIMATED PREVALENCE AND PROJECTIONS: LEARNING DISABILITY

It is important to consider the hidden population with learning disability – those not using services
(Emerson, 2011). Emerson and Hatton (2004) noted that research indicates that people with learning
disabilities who are not known to specialist services may still have some significant support needs, being
significantly more likely than their peers to be still living with their parents, be unemployed, have literacy
and numeracy problems and to experience high levels of psychological distress.

Emerson and Hatton (2004) suggested that roughly 20 people in every 1,000 have a learning disability,
but only 4.6 per 1,000 of these are likely to be known to local health and social services. These numbers
vary with age. Emerson and Hatton estimated the numbers known to services (administrative prevalence)
for each local authority for 5 year age bands up to 80+. Estimates were based on a sample of local
authority learning disability registers combined with census population data. They added estimates of
‘hidden’ numbers with learning disabilities (mainly mild) to calculate estimates of true prevalence.

23
Table 2 below shows the estimated true prevalence for each age group and sex. The national estimates in
Table 2 are adjusted to take into account variations relating to ethnicity (i.e. the increased prevalence of
learning disabilities in South Asian communities) and mortality (i.e. both increased survival rates of young
people with severe and complex disabilities and reduced mortality among older adults with learning
disabilities).

Table 2: Estimated True Prevalence of Learning Disabilities

Age Male Female Total
0-4 0.19% 0.11% 0.15%
5-9 1.21% 0.72% 0.97%
10-14 2.76% 1.73% 2.26%
15-19 3.22% 2.10% 2.67%
20-24 3.09% 2.11% 2.60%
25-29 2.84% 1.98% 2.40%
30-34 2.87% 1.97% 2.41%
35-39 2.82% 1.95% 2.38%
40-44 2.86% 1.95% 2.40%
45-49 2.66% 1.84% 2.25%
50-54 2.51% 1.74% 2.12%
55-59 2.44% 1.74% 2.09%
60-64 2.34% 1.62% 1.97%
65-69 2.17% 1.46% 1.80%
70-74 2.08% 1.42% 1.72%
75-79 1.89% 1.25% 1.52%
80+ 1.86% 1.23% 1.43%
Total 2.41% 1.62% 2.00%

Source: Emerson and Hatton (2004)

Children

In the absence of any other data on disabilities, the data on learning difficulties from Improving Health
and Lives: The Learning Disabilities Observatory (IHAL) is a proxy indicator of the prevalence of learning
disabilities amongst children.

IHAL considers that children with learning difficulties at ‘school action plus’ level or above have a learning
disability. ‘School action plus’ requires teachers to monitor the different or additional needs of the pupil,
and put into place any short term targets and observe what they achieve. ‘School action plus’ is where
school action has not helped the pupil to make adequate progress in their education. School action plus
seeks advice from the Local Education Authority's support services, from health and social work
professionals, giving recommendations on how to work more effectively with the child in class. A
statement of special educational needs will be used if the child’s needs are not met by the school action
plus (IHAL, online)2.

The Learning Disabilities Observatory (IHAL) use the Department of Education categories for classifying
the different levels of learning difficulties, as follows:

2
SEN Statements and Learning Difficulty Assessments are soon to be replaced by the 0 – 25 integrated
Education, Health and Care Plan (EHC Plan) for individual children and young people with special educational
needs and disabilities (DfE, 2013)

24
1. Moderate learning difficulties: Quite often children with moderate learning difficulties find it hard to
attempt new tasks alone and require individual pupil support, this is a result of low levels of self-esteem
and low confidence in their own abilities to complete the task.

2. Severe learning difficulties: School children with severe learning difficulties experience significant
intellectual cognitive impairments which require a high level of support in school.

3. Profound and multiple learning difficulties: School children with profound and multiple learning
difficulties can often have more than one disability. These disabilities can be physical and sensory, but
they will also have significant problems with learning. Most parents of children with profound and
multiple learning difficulties find that residential schools offer the best support.

4. Autistic spectrum disorder: School children with Autistic Spectrum Disorders can find changes to
routine very unsettling. Pupils need to be informed and prepared in advance of any changes. Some get
special support in mainstream school, and some attend specialist schools. Only certain levels of the
Autistic Spectrum are given Statements of Special Needs.

IHAL estimates that:

 Just under 16 children in every 1000 have a moderate learning difficulties

 Just over three and a half have severe learning difficulties
 Just over one has profound and multiple learning difficulties

Data on learning difficulties has been used here as a proxy indicator of the prevalence of learning
disabilities amongst children. IHAL took numbers of schoolchildren reported as having 'learning
difficulties' in the 2010 and 2011 annual school censuses. They used modelling techniques to make
allowance for differences in the way different local authorities code learning difficulties. Some seem to
have higher and some lower thresholds. Their modelled data show how many schoolchildren aged 7-15
with learning difficulties can be expected to live in each region, local authority and ward in England.

Table 3 gives estimates of numbers aged 7-15 expected to have different levels of learning difficulties in
each local authority in Cheshire and Merseyside, excluding those with a mild learning difficulty.

25
Table 3: Number of children aged 7-15 expected to have learning difficulties, 2010
Profound and
Moderate Autism
Severe learning multiple
LA All pupils learning spectrum
difficulties learning
difficulties disorder
difficulties
Halton 13,553 45 16 656 132
Knowsley 16,917 64 23 886 140
Liverpool 42,951 160 57 2224 384
Sefton 26,641 88 31 920 261
St Helens 18,049 66 73 753 177
Wirral 33,016 104 38 1352 329
Liverpool city
151,127 527 238 6,791 1,423
region
Cheshire
33405 100.8 33.8 836.7 322.2
East
Cheshire
West and 31,453 98 34 977 309
Chester
Warrington 21,145 62 22 604 212
Cheshire and
86,003 260 89 2,417 844
Warrington
Total
Cheshire and 237,130 787 327 9,208 2,267
Merseyside
Source: IHAL website, accessed May 2013, from 2010 school census
http://www.improvinghealthandlives.org.uk/projects/howmanyhavelearningdisabilities/numbers/index.php?LA=00BX

The severe learning difficulty category will not capture all those with learning disabilities. The moderate
learning difficulty category is broad and will include many children with no learning disability. There is a
need for data on the numbers of children with a learning disability.

Adults

PANSI (Projecting Adult Needs and Service Information) have used Emerson and Hatton’s (2004) paper to
calculate estimate true prevalence of learning disability amongst adults for each local authority. Figure 1
compares these estimates for Cheshire and Merseyside with the number of adults known to each local
authority taken from IHAL. Estimates relate to total learning disabilities (including mild, moderate and
severe). The total numbers for Cheshire and Merseyside are 35,896 (estimated true prevalence) and
7,775 (number probably known to services) aged 18-64 years.

The estimates do not take into account local variations, so there will be an over-estimate in communities
with a low South Asian community, and an under-estimate in communities with a high South Asian
community (Emerson and Hatton, 2004). In Cheshire and Merseyside, there are relatively low proportions
of people of South Asian origin.

26
Figure 1: Known prevalence and true prevalence estimates (numbers with learning disability age 18-64)

St. Helens 700

2,576
Sefton 805
3,861
Liverpool 1425
7,698
Knowsley 680
2,180
Halton 465
1,870
Wirral 1110
4,534
Warrington 525
3,062
Cheshire West and… 1060
4,804
Cheshire East 1005
5,311
0 2,000 4,000 6,000 8,000 10,000

Number probably known to services Likely True number

Source: PANSI, 2015

Figure 2 shows the prevalence across Cheshire and Merseyside by 10 year age bands. In Liverpool, the
proportion of people aged 25 and under estimated to have learning disabilities is relatively high (1,780).
This reflects the high proportion in this age group amongst the general population in Liverpool (67, 297,
14%).

27
Figure 2: Numbers of adults predicted to have a learning disability in Cheshire and Merseyside, by age
group, 2015

18-64 2,577
55-64 502
St Helens

45-54 605
34-44 535
25-34 548
18-24 387
18-64 3,850
55-64 833
Sefton

45-54 947
34-44 739
25-34 759
18-24 571
18-64 7,690
55-64 1,168
Liverpool

45-54 1,418
34-44 1,402
25-34 1,922
18-24 1,780
18-64 2,175
55-64 427
Knowsley

45-54 507
34-44 408
25-34 471
18-24 363
18-64 1,865
55-64 370
Halton

45-54 423
34-44 391
25-34 406
18-24 276
18-64 4,526
55-64 933
Wirral

45-54 1,098
34-44 919
25-34 921
18-24 655
18-64 3,075
Cheshire East Cheshire West Warrington

55-64 545
45-54 754
34-44 678
25-34 665
18-24 433
18-64 4,786
55-64 958
45-54 1,168
34-44 990
25-34 926
18-24 744
18-64 5,303
55-64 1,092
45-54 1,373
34-44 1,140
25-34 979
18-24 720
0 1000 2000 3000 4000 5000 6000 7000 8000 9000
Source: PANSI-8

28
PROJECTIONS

Projections of future numbers of people with learning disabilities are presented in the PANSI database.
They are based on the prevalence rates in the report by Emerson and Hatton (2004) (see Table 2 above).
Amongst those aged 18-64, the numbers with a learning disability are predicted to decrease slightly
across all local authorities with the exception of Warrington where a small increase is predicted. Although
the numbers in those aged 65 are considerably smaller (Figure 4) they are predicted to increase steadily
for each local authority between 2014 and 2030.

Figure 3: Projections to 2030 of numbers of people aged 18-64 predicted to have a learning disability

9,000
8,000
7,000
6,000
5,000
4,000
3,000
2,000
1,000
0
Cheshire
Cheshire Warringto
West and Halton Knowsley Liverpool Sefton St Helens Wirral
East n
Chester
2014 5,311 4,804 1,870 2,180 7,698 3,861 2,576 3,062 4,534
2015 5,303 4,786 1,865 2,175 7,690 3,850 2,577 3,075 4,526
2020 5,261 4,698 1,818 2,122 7,597 3,762 2,561 3,128 4,436
2025 5,200 4,601 1,778 2,041 7,484 3,639 2,536 3,155 4,339
2030 5,090 4,483 1,742 1,974 7,475 3,529 2,510 3,147 4,245
Source: PANSI-8

29
Figure 4: Projections to 2030 of people aged 65 years and over predicted to have a learning disability

2,500

2,000

1,500

1,000

500

0
Cheshire
Cheshire Warringt
West and Halton Knowsley Liverpool Sefton St Helens Wirral
East on
Chester
2014 1,662 1,400 438 505 1,427 1,264 723 746 1,367
2015 1,705 1,432 448 510 1,443 1,281 740 767 1,388
2020 1,896 1,585 516 562 1,559 1,387 810 851 1,507
2025 2,081 1,731 575 632 1,712 1,513 875 943 1,633
2030 2,336 1,927 641 714 1,897 1,671 963 1,075 1,797
Source: POPPI-8

MODERATE AND SEVERE LEARNING DISABILITY

PANSI data estimates are also available for two sub-categories of learning disability: ‘moderate and
severe’ and ‘severe’ learning disability. These are the groups of people most likely to be in receipt of
services, and numbers should therefore correspond to the ‘known’ or ‘administrative’ prevalence of
learning disability.

Cheshire and Merseyside

Table 4 shows numbers with moderate or severe learning disability for each local authority in Cheshire
and Merseyside. Numbers are slightly different to the known prevalence data shown in Table 5 (also see
Figure 5 in Section 2.2 below). There were estimated to be 5,159 people with moderate and severe
learning disability in Cheshire and Merseyside in 2013. The majority of this number (7775, 93%) were
known to the local authority. In Warrington there were far fewer people known to services than would
be expected from the estimated numbers (75%). Known numbers are also less than expected in an
additional four local authorities (Liverpool, Sefton, Cheshire East and Cheshire West) whilst the remaining
five local authorities had more people known to services than were estimated (see last column, Table 5).

30
Table 4: Numbers predicted to have a moderate or severe learning disability aged 18-64

Local Authorities 2014 2015 2020 2025 2030

Halton 425 424 414 406 400
Knowsley 495 494 481 465 453
Liverpool 1,747 1,746 1,729 1,712 1,720
Sefton 876 873 853 827 809
St. Helens 586 586 582 578 576
Wirral 1,030 1,028 1,008 988 973
Liverpool city region 5,159 5,151 5,067 4,976 4,931
Cheshire East 1,210 1,208 1,197 1,184 1,165
Cheshire West and Chester 1,094 1,090 1,068 1,047 1,026
Warrington 698 701 713 721 723
Cheshire 3,002 2,999 2,978 2,952 2,914
Cheshire and Merseyside 8,161 8,150 8,045 7,928 7,845
total
Source: PANSI-8

Table 5: Numbers with learning disability known to Local Authorities age 18-64 years, 2013/14

Local Authority 2013/14 % predicted number

Halton (321) 465 109.4
Knowsley (315) 680 137.4
Liverpool (316) 1425 81.6
Sefton (317) 805 91.9
St Helens (318) 700 119.5
Wirral (319) 1110 107.8
Liverpool city region 5185 100.5
Cheshire East 1005 83.1
Cheshire West And Chester (327) 1060 96.9
Warrington (322) 525 75.2
Cheshire 2590 86.3
Cheshire and Merseyside 7775 95.3
Source: NHS IC ASCCAR L2 (1st data column)

Table 6 shows future predicted numbers of those with severe learning disabilities. Between 2014 and
2030, numbers are expected to fall or remain constant in each local authority, with the exception of
Warrington, where numbers are likely to rise from 184 in 2014 to 191 in 2030.

31
Table 6: Numbers predicted to have a severe learning disability aged 18-64 years

Local Authority 2014 2015 2020 2025 2030

Halton 112 112 109 107 106
Knowsley 131 130 127 123 121
Liverpool 477 476 469 465 469
Sefton 229 229 223 217 214
St. Helens 155 154 152 152 152
Wirral 270 270 263 259 257
Liverpool city region 1374 1371 1343 1323 1319
Cheshire East 316 315 310 308 306
Cheshire West and Chester 288 286 280 275 272
Warrington 184 184 186 189 191
Cheshire 788 785 776 772 769
Cheshire and Merseyside 2162 2156 2119 2095 2088
Source: PANSI-8

Numbers of those with profound multiple learning disabilities are smaller than those with severe learning
disabilities. However, this group of people has particular needs and numbers, where available are
presented below.

PROFOUND AND MULTIPLE LEARNING DISABILITY

Definition: An individual with an IQ of less than 20 has a profound learning disability (ICD classification,
see Table 1 above). People with profound and multiple learning disability (PMLD) have more than one
disability, the most significant of which is a profound learning disability. They have great difficulty
communicating and need high levels of support with most aspects of daily life. Many people will have
additional sensory or physical disabilities, complex health needs or mental health difficulties. The
combination of these needs and/or the lack of the right support may also affect behaviour. Some other
people, such as those with autism and Down’s syndrome may also have profound and multiple learning
disabilities (Mencap, 2010 and PMLD network).

People with PMLD are a separate group from those with ‘complex’ or ‘high support’ needs, because in
addition, they have a learning disability. For example, someone with a physical disability and
communication impairment but high intellectual ability
may be described as having complex needs or high Box 1
support needs (PMLD network).
The need for local data on PMLD
There are about 16,000 adults with PMLD in England
(Mencap, 2010). At present, there is a lack of data on ‘Local authority social care services, together
numbers of people with PMLD known to local with their education and health partners,
authorities. should keep up-to-date information about the
number, needs and circumstances of people
Mencap highlighted the key issues relating to PMLD: with profound intellectual and multiple
 People with PMLD are frequently excluded disabilities in their area currently and projected
and remain some of the most disadvantaged future to enable effective planning of services’
people within our society. For this to change
there needs to be better understanding of Raising Our Sights, DH, 2010a
their distinctive needs. The numbers and

32
 needs of people with PMLD also need to be understood so that there can be better planning of
services. This was also emphasised in ‘Raising our Sights (see Box 1).

 People with PMLD have specific communication needs and many have complex health needs. We
need to meet these needs if people with PMLD are to be included like everyone else. This
requires investment in services and training for professionals working with people with PMLD,
such as training in how to communicate with people with PMLD.

 People with PMLD are not properly represented in self-advocacy groups and groups involved in
policy-making. It is important that the needs of people with PMLD are represented so that
decision makers understand what their needs are and plan appropriate services.

(Mencap 2013)

Cheshire and Merseyside

There is no local data available on known numbers of adults and children with PMLD (only on children
with profound and multiple learning difficulties). Estimates are presented as follows:

Children

There is some school census data on children with profound and multiple difficulties, but this is likely to
be different to the number with disabilities (see discussion in Section 1.2 and start of Section 2). Table 7
shows the numbers of children aged between 7 to 15 expected to have profound and multiple learning
difficulties in Cheshire and Merseyside. This is modelled data, calculated by IHAL, based partly on Spring
term school census data. As the educational needs of these children are unlikely to be met in mainstream
schools, the variation in numbers is possibly due to the existence of special schools in some areas –
although IHAL may have taken this into account when they calculated their estimates. Liverpool was the
local authority with the highest rate of children with PMLD per 1,000 population (1.54) and the largest
number of children (107).

Table 7: Number of children aged 7-15 years expected to have profound and multiple learning
difficulties, 2013/14
Local Authority Number of pupils Number with profound and Rate per 1,000
multiple learning difficulties
Halton * *
Knowsley * *
Liverpool 69316 107 1.54
St. Helens 26385 30 1.14
Sefton * *
Wirral 50641 63 1.24
Warrington 31540 26 .82
Cheshire East 53708 63 1.17
Cheshire West and 51070 55 1.08
Chester
Source: IHAL
Where rows are blank values have been suppressed by PHE for disclosure control due to a small count

33
Data from the annual school census, made available by Wirral for 2015, shows that there are less
children with profound and multiple learning difficulties than predicted in the IHAL estimates (Table
8). The IHAL data was based partly on the school census (see previous paragraph). The number
reported by Warrington was slightly lower than the number predicted in table 7.

Table 8 School Census data Pupils with PMLD with Statements and School Action Plus, 2015

Local Authority Number of children

Wirral Primary 53
Secondary 5
Total 58
Warrington Total 24
Source: Local Authorities

Adults

Despite the Department of Health call for local data (see Box 1 on previous page), local authority
registers of learning disabilities do not have a category indicating PMLD. Emerson (2009) produced a
paper estimating the future numbers of adults with PMLD in England. He suggests that there will be
a sustained and accelerated growth in numbers of adults with PMLD, with an annual percent
increase of 1.8%. There will be a corresponding increase in need and demand for health and social
care services for adults with PMLD.

This increase is due to a combination of factors, including changes in: birth rates; rates of incidence
of children being born with or acquiring PMLD; and changes in mortality amongst infants, children
and adults with PMLD (Emerson, 2009).

In an average area in England with a population of 250,000, Emerson predicted that there would be
around 78 adults with PMLD in 2009, rising to 105 in 2026. The number of young people with PMLD
becoming adults (i.e. age 18) in any given year will rise from 3 in 2009 to 5 in 2026 (per 250,000).
(N.B. the population of Liverpool is very close to Emerson’s ‘average area population’ of 250,000).

Rates would be higher in communities that have a younger demographic profile and in those that
contain a greater proportion of people of Pakistani or Bangladeshi origin. Emerson’s estimates allow
for demographic changes and the increased mortality of people with PMLD.

Guidelines for people with Profound and Multiple Learning Disabilities

Guidelines on the Care and Management of people with PMLD are summarised in the appendix

34
2.2 KNOWN PREVALENCE (LOCAL AUTHORITY DATA): LEARNING DISABILITY

Children

Local authorities are not required to maintain registers of children with learning disabilities. As a proxy,
some local authorities have looked at data on children with statements of educational need (SEN) and
learning difficulties. However, this does not reflect the spectrum of disability and is only a weak proxy
measure for severity (St. Helens JSNA, 2012). It is also likely that there are different definitions of each
level of learning difficulty used by each school.

Table 9 below shows data provided by Local Authorities on the numbers of children who have either
Statements of Educational Need or School Action Plus status for learning difficulty. Children with learning
difficulties who leave school at 16 will not be captured. Data for Liverpool was not available for 2015 so
data from the previous needs assessment (2012 school census) has been included to give an indication of
the numbers; however caution must be taken when comparing this data with other local authorities.

Table 9: Pupils with Statements and School Action Plus

SEN Need Type Moderate Profound & Severe Learning Specific Learning
Learning Difficulty Multiple Learning Difficulty Difficulty
Difficulty

Liverpool, Jan
1,529 76 389 1,068
2012
Wirral Jan 2015 542 88 363 642

Source: Liverpool City Council and Wirral Borough Council, School census

Table 10: Pupils with Statements

Profound &
Moderate Severe Learning Specific Learning
SEN Need Type Multiple Learning
Learning Difficulty Difficulty Difficulty
Difficulty
Warrington Jan
24
2015
Wirral Jan 2015 329 50 359 231

Source: Warrington Borough Council, Wirral Borough Council; School Census

There is data available on learning disability amongst children from the Joint Health and Social Care Self-
Assessment Framework (SAF); data from local authority level returns is summarised in table 11 below.
Across Cheshire and Merseyside, 11% of people reported to the SAF were aged between 0 and 17 years.
There was some variation in the proportion of 0-17 year olds across Local Authorities with the highest
number seen in Sefton where just under one in five (19%) reported in the SAF were aged 17 years and
under. The numbers reported by local authorities are considerably lower than the numbers of children
predicted by IHAL to have learning difficulties (table 3).

35
Table 11: Number of children (0-17 years) with learning disabilities, 2013

0-13 14-17 years Total aged 0-17 Total population % of total population
years years with LD reported aged 0-17 years
Halton 26 29 55 732 8%
Knowsley 50 47 97 989 10%
Liverpool 144 131 275 2198 13%
Sefton 108 110 218 1152 19%
St Helens 65 49 114 929 12%
Wirral 91 93 184 1731 11%
Cheshire East 42 51 93 1100 8%
Cheshire West 48 46 94 1224 8%
and Chester
Warrington 47 35 82 745 11%

Source: Joint Health and Social Care Needs Assessment, IHAL, 2013.

Single dataset for children and young people:

Liverpool City Council (Adults & Children’s Social Care & Education) is working in partnership with Mersey
Care, CCGs and external service providers such as Connexions towards producing a single dataset for
children and young people. It is intended the single dataset will provide clear and comprehensive
information on the needs and trends of children and young people with Special Educational Needs and
Disability across services in Liverpool. To facilitate this a scoping exercise is underway to identify what
datasets already exist, who they are being held by and in what system. Preliminary discussions are taking
place with stakeholders to determine what information sharing agreements are in place and to identify
any gaps. It is expected that the dataset will be in place in 2015/16 subject to data governance issues
being met.

2014 Children and Families Act

Following the passing of the Children and Families Act in 2014, SEN Statements and Learning Difficulty
Assessments have been replaced by the 0 – 25 integrated Education, Health and Care Plan (EHC Plan) for
individual children and young people with special educational needs and disabilities. EHC Plans cover
young people with learning disabilities aged 0-25 years and have the same protection in law as SEN
statements. The new arrangement should assist in ensuring that health service agreements (involving
school nurses and health visitors) identifying those with learning disability and autism are built into
tendering arrangements with schools and colleges. Data provided by local authorities for this needs
assessment was mainly recorded by SEN and School Action plus but Wirral report on a small number of
children with an EHC.

Adults 18-64

Known prevalence data for ages 18-64 was obtained from the Adult Social Care Combined Activity
Returns (ASCCAR, NHS Information Centre). Figure 5 shows the prevalence in each local authority per
10,000 general population (aged 18-64 years). Rates of learning disability are highest in Knowsley, at 70
per 10,000 population and lowest in Warrington, at 40 per 10,000 population. The numbers of people
with learning disabilities known to local authorities in Cheshire and Merseyside is shown in Figure 6

36
below, with a total of 7,775 adults across the whole area (4,530 males and 3,240 females). The data
relates to people of working age (18-64) and is broken down by sex.

Figure 5: Prevalence of learning disabilities: People known to the local authorities as having a learning
disability per 10,000 population aged 18-64, 2013/14

80

70

60
Prevalence per 10,000 population

50

40
75
65
30 60 60
55
50
45 45 45 45
20 40

10

0
Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens Warrington Wirral North West England
East West And Total Total
Chester

Source: NHS IC NASCIS, ASCCAR L2

Gender

Of those know to services, learning disability appears to be more prevalent amongst men. Across
Cheshire and Merseyside, the proportion of those with learning disabilities who are male ranges from 54%
in St. Helens to 62% in Sefton (Figure 6). In 2013/14, there were more females than males in the general
population of each local authority, which means that if rates of learning disability by sex were calculated,
rates for males would be considerably higher than for females. This could be partly accounted for by the
much higher prevalence of autism amongst males (HSCIC, 2009). Autistic spectrum disorders are shown
by between 20%-33% of people with learning disabilities known to the local authorities (Emerson et al,
2012) (see section 2.4 for more details of autism).

37
Figure 6: Number of people with learning disabilities known to Local Authorities, 2013/14

1600
1,425
1400

1200 1,110
1,005 1,060 580
1000
805 440
800 415 460
680 700
305 525
600 465
295 320
400 840 220
205 670
590 600
500
200 385 380
260 305
0
Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens Warrington Wirral
East West And
Chester
Male Female

Male Female
Cheshire East 59% 41%
Cheshire West And Chester 57% 43%
Halton 56% 44%
Knowsley 57% 43%
Liverpool 59% 41%
Sefton 62% 38%
St Helens 54% 46%
Warrington 58% 42%
Wirral 60% 40%
Cheshire and Merseyside 58% 42%
North West 58% 42%
England 58% 42%

Source: NHS IC NASCIS, ASCCAR L2

Data provided directly from Wirral Borough Council and taken from their Self-Assessment Framework
(SAF) return in 2013/14, indicated that there were 1,470 people aged 18-64 with learning disabilities. This
is higher than the 1,110 known to social services reported to the NHS Information Centre (ASCCAR) in
2013/14 (see Figure 6 above).

Similarly the number of people provided directly by Liverpool City Council reported 1,559 individuals with
learning disabilities known to the local authority in 2015 which again is higher than the number reported
in figure 6 (1,425 individuals).

Data provided by Sefton states there are 1,606 adults aged 18-64 which again is substantially higher than
the 805 individuals reported to the HSCIC in figure 6.

38
In Warrington the numbers provided directly from the local authority were also slightly higher than the
number reported in figure 6 at 573 compared with 525.

Conversely, data provided by Cheshire West and Chester council and supplied directly from their
information system reports that there were 852 adults with learning disabilities known to the local
authority which is less than the 1,060 individuals reported to the HSCIC in 2013/14 (figure 6). The data
provided by the local authority is based on the ASCOF rules which count only those receiving a service for
a learning disability and this may account for some of this difference.

The number provided by St Helens for 2014/15 states that 682 adults aged 16-84 years with learning
disabilities are known to the local authority which is slightly lower than number reported to the HSCIC in
figure 6.

Ages 65+

Data for those aged 65 and over with learning disabilities is not available from the Adult Social Care
Combined Activity Returns (ASCCAR, NHS Information Centre); however data on the number known to
each partnership board is reported to the Joint Health and Social Care Self-Assessment Framework (SAF)
and data from the 2013 SAF is included in table 11 below. The prevalence of learning disabilities in adults
aged 65 years and over was highest in Knowsley (36.9 per 10,000) and lowest in Cheshire East (13.6 per
10,000 population). The overall prevalence of learning disabilities in Cheshire and Merseyside among
older adults was 19.7 per 10,000.

Table 11: Prevalence of learning disabilities in older adults (aged 65 years and over)

Adults with Total population aged Prevalence per

LD aged 65 65 plus 10,000 population
plus
Halton 52 21013 24.7
Knowsley 90 24365 36.9
Liverpool 205 69305 29.6
Sefton 104 61153 17.0
St Helens 59 34845 16.9
Wirral 128 65998 19.4
Cheshire East 112 80564 13.9
Cheshire West and Chester 112 67564 16.6
Warrington 48 36066 13.3
Cheshire and Merseyside Total 910 460873 19.7

Source: Joint Health and Social Care SAF, IHAL, 2013 and ONS mid-2014 population estimates.

Data provided directly from Liverpool local authority reports 205 individuals with learning disabilities
aged over 65 years of which 72% are aged between 65 and 74 years, 23% are aged between 75 and 84
years and 5% are aged 85 years and over.

Data provided directly from Sefton reports 249 adults aged 65 years and older known to the local
authority which is considerably higher than the number reported to the SAF in table 11 above.

Data provided directly by St Helens reports 35 individuals aged 65-84 which is lower than the 59 reported
to the SAF in table 14.

39
Warrington data reports 37 individuals known to the local authority aged 65 years and over of which 95%
were aged between 65 and 74 years. This is again lower than the number reported in the SAF in table 14.

Data provided by Wirral on adults with learning disabilities aged 65 years and over for 2013/14 is slightly
higher (148 individuals) than the number reported in the 2013 SAF (128 individuals, table 14) and this
number has increased to 163 in 2014/15.

2.3 KNOWN PREVALENCE AGED 18+ (GP DATA): LEARNING DISABILITY

The Directed Enhanced Service (DES) for learning disabilities was set up in 2008 to provide primary care
practices with funding to set up learning disability registers and provide health checks for people on that
register. The Enhanced Service (ES) has been extended for 2015/16 to allow practices to offer medicals to
patients (aged 14 years and older) and requires practices to produce a health action plan. Establishing
and maintaining the GP Learning Disability Register is part of the 2015-16 Quality and Outcomes
Framework (QOF) dataset.

The definition of learning disability used in primary care is based on the World Health Organisation ICD
classification, using IQs (see table 1 in Section 1.2 above). However, Weston et al (2012) point out that IQ
scores may not be readily available in primary care, so that in practice, the definition of learning disability
tends to be based on the one used in Valuing People (DH, 2001) (see Section 1.2 above).

Cheshire and Merseyside

Table 15 shows that across Cheshire and Merseyside in 2014-15, levels of learning disability recorded in
general practice were equal or higher than the national average of 0.44% in eight out of 12 CCGs. The
four CCGs with a prevalence below 0.44% were all in Cheshire namely: East Cheshire, South Cheshire,
West Cheshire and Warrington. Levels were highest in Knowsley and Halton, at 0.63% of the total
practice population aged 18 plus in both CCGs.

As would be expected, levels and patterns are similar to local authority learning disability register data,
where percentages were highest in Knowsley (0.75 %) and lowest in Warrington (0.40%) (see Section 2.2,
Figure 5).

Table 12 also includes numbers on the register and practice level variation in prevalence. Variations
between practices are most notable in Southport & Formby, where the percentage of the practice
population aged 18 plus on the learning disability register is as high as 2.11% in one practice. In the other
18 practices, the proportion on the register varies from 0.15% to 1.05%. In Liverpool, the prevalence in
one practice was 1.52%, with the rest ranging from 0.06% to 1.40%.

40
Table 12: Number and percentage on the GP Learning Disability Register, and range of learning
disability (LD) prevalence across practices, 2014-15, ages 18+
CCG Name Estimated Learning Prevalence Lowest Highest
List Size 18+ Disability Rate practice practice
Register (per cent) prevalence prevalence
NHS EASTERN CHESHIRE 165,944 635 0.31 0.06 0.66
CCG
NHS SOUTH CHESHIRE CCG 143,009 614 0.34 0.11 0.83
NHS VALE ROYAL CCG 81,631 448 0.44 0.25 0.68
NHS WARRINGTON CCG 168,431 838 0.39 0.11 0.71
NHS WEST CHESHIRE CCG 209,906 939 0.36 0.09 0.88
NHS WIRRAL CCG 265,696 1,909 0.57 0.15 1.37
NHS HALTON CCG 100,147 802 0.63 0.2 0.87
NHS KNOWSLEY CCG 127,066 1,019 0.63 0.29 1.21
NHS SOUTH SEFTON CCG 119,067 654 0.44 0.11 1.01
NHS SOUTHPORT AND 101,119 749 0.61 0.15 2.11
FORMBY CCG
NHS ST HELENS CCG 152,668 937 0.49 0.16 0.9
NHS LIVERPOOL CCG 409,607 2,468 0.49 0.06 1.52
Source: NHS IC QOF

Actual numbers on the GP learning disability register are higher than numbers recorded by local
authorities in Section 2.2 above. This is partly because GP data counts all those aged 18+, and data readily
available from local authorities is for ages 18-64 only.

However, some of the differences appear to be larger than would be expected, for example in Liverpool
there are 2,468 people on the GP learning disability registered compared with 1,425 on the local
authority register. Similarly Wirral GP register data reports 1,909 adults with learning disabilities
compared with 1,110 on the Local Authority register.

These differences could be partly due to the fact that GP registers are capturing more people with
learning disabilities, as they will include those not necessarily known to local authority services. They
could also be due to the fact that data is not directly comparable, because GP registered populations are
different to local authority resident populations.

GP data was obtained for Wirral for 2014/15 which includes ethnic group. There were 23 people on the
GP learning disability register from a minority ethnic group. This dataset also included numbers with
learning disability by age groups 0-13; 14-18; 19-25; 26-64 and 65+ which is provided in table 13 below.
This data is available because Wirral has set up a service level agreement (SLA) to reward GPs for
improved recording of learning disability. It has had the effect of increasing figures on GP databases and
has the potential to capture those not currently receiving services from the local authority.

41
Table 13: Wirral: Numbers on the GP learning disability register by age group
Age group Number of people with a Learning Disability
2013/14 2014/15
0-13 inclusive 144 180
14-17 inclusive 90 113
18-34 inclusive 563 706
35-64 inclusive 907 999
65+ 148 163

Guidelines: GP learning disability registers

 In order to be effective, primary care services need to ensure that learning disability QOF registers
reflect local prevalence data.

 The registers should be validated at least on a yearly basis. This will enable reasonable
adjustments to be made, reducing the inequalities in access to and provision of care for people
with learning disabilities.

from the learning disability commissioning guide for Clinical Commissioning Groups (CCGs) (IHAL, 2012), quoting Health
Self-Assessment (SAF) indicators.

2.4 AUTISTIC SPECTRUM DISORDER (ASD)

Autistic Spectrum Disorder (ASD) has been defined in Section 1.2. ASD has been found to have some
associations with gender, age, ethnicity and socio-economic status, identified by Emerson and Baines
(2010) for IHAL (see Section 2 above).

The rate of ASD among men (1.8%) is higher than that among women (0.2%) (HSCIC, 2009). The National
Autistic Society noted the need for further exploration of how autism affects males and females
differently. Their survey of around 3,000 people with autism and 5,500 carers found that it was harder for
females to get a diagnosis and that they were more likely to be mis-diagnosed (Bancroft et al 2013). Only
one-fifth of females with Asperger’s syndrome or higher functioning autism had been diagnosed by the
age of eleven, compared to half of males. This is possibly because autism is often seen as a male
condition.

The survey found a lack of awareness amongst those making diagnostic referrals (GPs and health visitors),
leading to autism being overlooked and not recognised. Fifty five per cent of people with autism said it
took too long to get a diagnosis. The authors highlight the official guidelines for diagnosis (NICE, 2011 and
2012).

The National Autistic Society survey also revealed that over two thirds (38%) of adults with autism still
lived at home with their parents. Of this group, around half (48%) said they would like to live in their own
home, with or without support (Bancroft et al, 2013).

The survey also found that 27% of people with autism have been excluded from school, compared to 4%
of children without autism.

42
Learning disability and autism

Autistic spectrum disorders are shown by between 20%-33% of people with learning disabilities known to
the local authorities (Emerson et al, 2012).

There is even more variation in estimates of the proportion of people with ASD who have a learning
disability. Emerson and Baines (2010) suggested that the estimate amongst children was somewhere
between 40% and 67%. The National Autistic Society discussed possible reasons for the different
estimates. They noted that some very able people with ASD may never come to the attention of services
as having special needs, because they have learned strategies to overcome any difficulties with
communication and social interaction and found fulfilling employment that suits their particular talents.
Other people with ASD may be able intellectually, but have need of support from services, because the
degree of impairment they have relating to social interaction hampers their chances of employment and
achieving independence (National Autistic Society, 2013).

The European Commission (2005) highlights the problems associated with establishing prevalence rates
for ASDs. These include inconsistencies of definition over time and between locations. Unlike learning
disabilities, there is no register held by general practice. However, using data from prevalence studies, it
is possible to estimate numbers.

ASD in children

Expected numbers of children with ASD have been estimated by applying the prevalence rate of 1%
reported by the National Autistic Society (2013) to local populations.

Figure 7 shows the numbers of children aged under 18 estimated to have autism across Cheshire and
Merseyside, projected to 2025. In 2015, there were 5,488 children predicted to have autism. Numbers
are set to rise slightly in each local authority across the region. By 2025, projections indicate that there
will be 5,663 children with ASD across Cheshire and Merseyside.

43
Figure 7: Projected estimates of numbers of children with ASD, 2014 to 2025

1200

1000

800

600

400

200

0
2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025
Cheshire East 823 822 822 821 822 822 825 829 835 838 840 841
Cheshire West and Chester 737 736 736 736 736 736 739 741 746 749 751 752
Halton 307 308 308 308 308 307 307 309 309 310 310 309
Warrington 489 490 491 495 497 501 503 507 513 517 520 522
Knowsley 359 357 356 354 355 354 356 357 360 361 363 364
Liverpool 1047 1044 1044 1044 1046 1048 1053 1059 1069 1078 1085 1093
Sefton 591 587 585 581 583 582 582 585 589 590 594 596
St Helens 402 402 403 404 405 407 408 411 416 418 420 421
Wirral 744 742 742 742 744 746 749 753 756 760 762 765
Based on 1% prevalence estimate applied to 2012 population projections (ONS, 2014)

Emerson and Baines (2010) reviewed the most recent prevalence studies and concluded that it is likely
that the prevalence of learning disability amongst children with autism is somewhere between 40% and
67%. The average prevalence across the studies reviewed by Emerson & Baines was around half (52.6%).
This means that at least half of those children with autism should have come to the attention of schools
as having special educational needs.

However, as noted above, even those with autism who are intellectually able may still require support to
help them to overcome communication difficulties.

Known prevalence: Data on the number of school pupils with statements or school action plus for ASD is
recorded in the school census which is published in the special educational needs dataset by the
department of education (table 14).

44
Table 14: Pupils with ASD as primary special educational need (SEN), 2015
Autistic Spectrum Disorder
Number % of all children with a
statement of need
Cheshire East 17 6.0
Cheshire West and Chester 241 29.1
Halton 129 44.6
Knowsley 127 31.1
Liverpool 322 25.3
Sefton 233 41.4
St. Helens 156 39.4
Warrington 89 30.2
Wirral 210 20.9

School census published in Special Educational Needs in England, 2015, DofE

Data on pupils with ASD was provided directly by just two local authorities. The Warrington 2015 census
found that there were 315 pupils with ASD with statements. In Wirral there were 850 school children
known to have ASD of which 132 had School Action Plus, 494 had a statement, 10 had an Education,
Health and Care Plan. Overall 1.4% of school pupils were known to have ASD and 16% of children with
statements or school action plus were known to have ASD. The data from both local authorities was
considerably higher than the number published by the Department of Education but this may in part be
because this data only publishes information based on primary SEN.

ASD in adults:

An assessment of the issues arising from completion of the local authority autism self-assessment
framework in 2011 was undertaken (Roberts et al, 2012a). Issues included the identification of a major
gap in local information about people with autism, such as the number of people with autism, and what
services they use.

In the absence of known numbers, estimates can be calculated using the national morbidity survey on
autism in adults. This survey found the prevalence of ASD to be 1.0% of the adult population (HSCIC,
2009). The rate among men (1.8%) was higher than that among women (0.2%), which fits with the profile
found in childhood population studies, according to the HSCIC.

In the PANSI database, these prevalence rates have been applied to ONS population estimates of the 18
to 64 male and female population to give expected numbers predicted to have autistic spectrum disorder.

Figure 8 shows the expected prevalence of ASD amongst adults aged 18-64 across Cheshire and
Merseyside, with 1,497 females and 13,085 males (14,582 total). There are around nine times more
males than females expected to have autism. This is much higher than in learning disability as a whole,
where expected prevalence rates amongst males are only slightly higher than amongst females (Table 2
above).

45
Figure 8: Males and Females predicted to have an Autism Spectrum Disorder (ASD)

3,500
311
3,000

2,500
221
2,000 202
193
163
1,500
2,819 126
107
1,000 1,958 95
1,742 79 1,638
1,399
500 1,141
949
679 760

0
Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens Warrington Wirral
East West and
Chester

Male Female

Source PANSI, 2015

Local authority data on known prevalence

Data obtained directly from some local authorities was not always consistent. Where data was available,
some data systems do not distinguish between learning disability and autism. Also, it was not common
practice to specify separate numbers with Asperger’s syndrome.

In Knowsley in 2013, there were reported to be 858 adults known to services with autism including 222
aged 65+. This is substantially higher than the numbers provided in the previous needs assessment
suggesting that these numbers may be based on projections rather than the numbers known to the LA.

Data obtained from Cheshire West and Chester reported that there were 65 people with autism. This is
considerably lower than the number projected in figure 8 but the Local Authority acknowledged that this
number is likely to be an underestimation due to data categorisation from health services.

Self-Assessment Framework data from South Sefton for 2014 indicated that there were 205 adults aged
18+ with learning disabilities who also had autism and were known to general practice.

Amongst children with autism, it is expected that at least half will have a learning disability that would
lead to them being identified by the authorities (see text following Figure 7 above). Numbers of adults
with autism who are known to services (where available) are far smaller than the estimated prevalence of
autism shown in Figure 8 above. This would suggest that there are a large number of adults with autism
unknown to the local authorities who may be in need of additional support.

46
Autism and learning disability

The Joint Adult and Social Care Self-Assessment Framework (SAF) shows the numbers of individuals
having both learning disability and autism (Table 15). Amongst adults with learning disabilities, between 5%
and 16% also had a diagnosis of autism.

Table 15: Number of adults with Learning Disability and ASD, 2013
Number of people
Total people with
with Learning %
learning disability
Disability and ASD
Halton UA 54 732 7%
Knowsley 114 989 12%
Liverpool 101 2198 5%
St Helens 56 1152 5%
Sefton 135 929 15%
Wirral* 1731
Warrington UA 121 745 16%
Cheshire East UA 81 1100 7%
Cheshire West And Chester UA* 1224

Source: Joint Adult and Social Care Self-Assessment Framework, IHAL, 2013 *Data field not completed

ASPERGER’S SYNDROME

Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above
average intelligence. They have fewer problems with speech but may still have difficulties with
understanding and processing language. (Source: The National Autistic Society, www.autism.org.uk).

Proposed changes in the diagnosis of Asperger’s disorder involve collapsing the condition into the general
spectrum of autism. In an analysis of online discussions about this proposal, Giles (2013) found that many
members of the online Asperger’s community welcome the notion of the spectrum. Others, however, are
suspicious of the motives behind the absorption of Asperger’s disorder, and potential threats to the
benefits it brings (mainly access to mental health and other services).

There is a need to know more about the numbers and needs of people with High Functioning Autism and
Asperger syndrome, in order to support them better, particularly as they are unlikely to meet stringent
eligibility criteria for social care services (Roberts et al, 2012a). Higher level autistic spectrum disorders
are excluded from the definition of learning disability in Valuing People. This would include some people
with Asperger’s syndrome (DH, 2001).

Local data

There is no readily available data on numbers of people with Asperger’s. GP data is coded for Asperger’s
but this data was not readily available. Data from two providers reported around 580 people with
Asperger’s on their caseload for 2015.

In Cheshire and Merseyside there are two specialist Asperger’s teams based in Liverpool and Sefton.
Many other local authorities in the country do not have such support available. However, these teams do
not deal with people who have Asperger’s with a learning disability; these individuals would be the
responsibility of the learning disability team so these numbers are likely to underreport both the number
of individuals with Asperger’s known to services and the number in the overall population.

47
In 2015, there were a total of 302 people on the Liverpool and Sefton Asperger’s Team caseload of which
62% were resident in Liverpool CCG, 21% were resident in Southport and Formby CCG and 16% in South
Sefton CCG. There were 123 referrals to the two specialist Asperger’s Teams in 2015.

Cheshire and Wirral Partnership also provided data on the number of individuals with a primary or
secondary diagnosis of Asperger’s. There were 288 people with Asperger’s who had contact with the
service in 2015 of which 19 also had a diagnosis of learning disability. The majority of adults with learning
disability were resident in Wirral CCG (43%).

Table 16 below shows the number of people with Asperger’s accessing Mersey Care and Cheshire and
Wirral Partnership (CWP) in 2015. The total number for each service is lower than the totals given above
as both services have a small proportion of individuals accessing from outside of Cheshire and
Merseyside. It is also possible that the totals given could represent some double counting if any
individuals have moved across the two services during the year. Data from 5 Borough Partnership was
not available at the time of publication and so the numbers for Knowsley, Halton, St Helens and
Warrington are likely to be much lower than the numbers actually known to services.

Table 16: Individuals with Asperger’s known to services, 2015

Mersey Care CWP Total
NHS EASTERN CHESHIRE 40 40
CCG
NHS SOUTH CHESHIRE 33 33
CCG
NHS VALE ROYAL CCG 12 12
NHS WARRINGTON CCG <5 <5
NHS WEST CHESHIRE 40 40
CCG
NHS WIRRAL CCG 125 125
NHS HALTON CCG <5 <5
NHS KNOWSLEY CCG <5 <5
NHS SOUTH SEFTON CCG 47 <5 <50
NHS SOUTHPORT AND 63 63
FORMBY CCG
NHS ST HELENS CCG <5 <5
NHS LIVERPOOL CCG 188 13 201

Source: Mersey Care and Cheshire and Wirral Partnership

Guidelines: Autism

NICE Guidance on the diagnosis and management of people with Autism is summarised in the Appendix

48
3: HEALTH PROFILE

The hidden prevalence of the majority of learning disabilities and autism has been described in Section 2.
This means that for most people with a learning disability, their disability is unknown to their GP. Glover
and Emerson (2012) point out that even if referrals between GPs and specialist services are working well,
many people with learning disabilities, when referred to hospital, will arrive with no advance warning.
The group most likely to be missed will be those with mild to moderate learning disabilities (using the
healthcare term - moderate learning difficulties using the education term) and possibly even some with
severe learning difficulties. This group are unlikely to be able to understand more than very simple
written literature, may struggle with written correspondence, have difficulty at keeping appointments,
and need particular help with explanations for purposes of consent or after care. They are likely to have
particular difficulties with treatment regimes, such as for diabetes, requiring a degree of understanding
of how their body works (Glover and Emerson, 2012).

Specialist providers need to be able to identify people with learning disabilities and autism for themselves.
As pointed out by Glover and Emerson (2012), learning disability is always relevant when caring for
someone in hospital, so when present, should always be recorded as a co-morbid condition. However, in
practice, although the full extent of missing data is unclear, it is known to be substantial (Glover and
Emerson, 2012).

3.1 DISEASE PREVALENCE AND ACCESS TO CARE

The report by Emerson et al (2012) summarised the literature on inequalities in health status faced by
those with learning disabilities. Key facts include the following:

 Amongst those aged 65+, the prevalence of dementia is higher amongst those with learning
disabilities (22%) compared to the general population (6%). Amongst those with Down’s
syndrome, the risk of dementia is high and the age of onset is 30-40 years younger than the
general population.

 The risk of epilepsy is at least 20 times higher amongst those with learning disabilities than for
the general population. The NHS Information Centre study into access to healthcare found that,
of all people with epilepsy, those with learning disabilities had higher rates of seizures (NHS IC,
2010). It was noted that patients with learning disabilities and epilepsy often have many
different seizure types, which may be more difficult to treat.

 Around 40% of people with learning disabilities have a hearing impairment (47% of those with
Down’s syndrome).

 Visual impairments are between 8 to 200 times more likely amongst those with learning
disabilities compared to the general population.

 Pain was reported by 67% of people with learning disabilities when asked about their health, and
18% said they did not tell people when they were in pain.

 The estimated prevalence rates of sleep problems in adults with learning disabilities range from
9% to 34%, (9% for significant sleep problems).

49
INEQUALITIES IN ACCE SS TO CARE:

Inequalities in cancer care mean that those with learning disabilities are less likely to be told their
diagnosis, to be given pain relief and to be involved in decisions about their care (Emerson et al 2012).

Amongst those with learning disability, lower rates of same-day antibiotic prescribing for patients
diagnosed with urinary tract infection were found in the NHS Information Centre study into access to
healthcare (NHS IC, 2010).

Other examples of inequalities in care are discussed relating to screening and contraception in Section
3.3 below.

MERSEYSIDE AND NORTH CHESHIRE DATA ON BURDEN OF DISEASE IN PRIMARY CARE

Data on co-morbidities amongst people with learning disabilities and autism is not routinely available,
apart from the annual health checks required as part of the QOF GP Learning Disability Register (see
section 3.2). However data provided by local authorities and LDSAF information does demonstrate some
consistency with the findings of national research described above. BMI and obesity is the only measure
provided by all the LAs that includes a rate as well as an absolute number. For comparison the England
average of percent of adults with a BMI over 30 and therefore classed as obsess is 24% (PHE 2015).

Cheshire East

Cheshire East provided some information on other health conditions on their LDSAF returns. No total
figure or number of people with learning disability was provided on the LDSAF so it is not possible to
display prevalence data. The data shows that in Cheshire East over a third of people with a learning
disability are obese and the most common health condition is epilepsy.

Table 17: Other health conditions for people with a learning disability in Cheshire East

Health condition Number of people (% where appropriate)

BMI recorded 705
BMI over 30 242 (34%)
BMI less than 18.5 6 (1%)
Coronary Heart Disease 8
Diabetes (type 1 & 11) 47
Asthma 78
Dysphagia 195
Epilepsy 247

Source: LDSAF return 2014.

Cheshire West and Chester

Cheshire West and Chester were unable to provide data on the total number of people with learning
disabilities so it is not possible to display prevalence. Over a third (39.2%) of people with learning
disabilities are obese and the most common health condition is epilepsy.

50
Table 18: Other health condition for people with a learning disability in Cheshire West and Chester

Health condition Number of people (% where appropriate)

BMI recorded 278
BMI over 30 109 (39.2%)
BMI less than 18.5 0
Coronary Heart Disease -
Diabetes (type 1 & 11) 21
Asthma 54
Dysphagia 71
Epilepsy 96

Source: LDSAF return 2014.

Cheshire West and Chester provided some additional data on health conditions of people with
learning disabilities living in the LA displayed in table 21.

Table 19: Other health conditions for people with a learning disability in Cheshire West and Chester

No of No of Learning, Long-Term Long- Mental Sensory No

Health People Development Health Term Health Impairment Relevant
condition or Intellectual Condition - Health Condition Long-
s Disability Neurologica Condition Term
l - Physical Health
Conditio
ns
1 586 530 17 16 17 5 4
2 128 127 31 59 29 10 0
3 30 30 19 24 6 10 1
4 6 6 5 6 2 5 0

Source: provided by CWaC local authority

Halton

Halton also provided some information on other health conditions on their LDSAF returns. A total of 774
people with learning disability was provided in the LDSAF so it has been possible to display prevalence
data. The data shows that in Halton over half of people with a learning disability are obese and the most
common health condition is epilepsy (19.6%).

Table 20. Other health conditions for people with a learning disability in Halton
Health condition Number of people % of patients with LD
BMI recorded 541
BMI over 30 272 50.3
BMI less than 18.5 26 4.8
Coronary Heart Disease 13 1.7
Diabetes (type 1 & 11) 60 7.8
Asthma 70 9.0
Dysphagia 49 6.3
Epilepsy 152 19.6

51
Knowsley

The only information available from Knowsley on other health conditions was included in their Joint
Health and Social Case Learning Disabilities Self-Assessment Framework return (2014). Knowsley were
unable to provide data on the total number of people with learning disabilities so it is not possible to
display prevalence. Over half of the people with learning disabilities within Knowsley (for whom a BMI
was recorded) were obese.

Table 21: Other health conditions for people with a learning disability in Knowsley
Health condition No. people (% where appropriate)
BMI Recorded 795
BMI over 30 427 (53.7%)
BMI less than 18.5 24 (3%)
Coronary Heart Disease 12
Diabetes (type 1 & 11) 93
Asthma 81
Dysphagia 110
Epilepsy 226

Source Knowsley LDSAF

Liverpool

The information available from Liverpool on other health conditions was included in their Joint Health
and Social Case Learning Disabilities Self-Assessment Framework return (2014). Liverpool reported there
were a total of 2326 people with learning disabilities in the area. Forty-two percent of people (for whom
a BMI was recorded) were over obese and 17% of people with a learning disability also have epilepsy.

Table 22: Other health conditions for people with a learning disability in Liverpool

Health condition No. people known % of patients with LD

BMI recorded 1403
BMI over 30 590 42%
BMI less than 18.5 66 4.7%
Coronary Heart Disease 178 7.7%
Diabetes (type 1 & 11) 167 7.2%
Asthma 155 6.7%
Dysphagia 98 4.2%
Epilepsy 406 17.5%

Source: Liverpool LDSAF

Sefton

The information available from Sefton on other health conditions was included in their Joint Health and
Social Case Learning Disabilities Self-Assessment Framework return (2014). Total number of patients with
learning disabilities was unclear from the return so prevalence is not provided. Almost half (45%) of
patients are obese and a high number have epilepsy.

52
Table 23: Other health conditions for people with a learning disability in Sefton
Health condition No. people (% where appropriate)
BMI recorded 1255
BMI over 30 568 (45.2%)
BMI less than 18.5 86 (6.9%)
Coronary Heart Disease 35
Diabetes (type 1 & 11) 121
Asthma 329
Dysphagia 28
Epilepsy 378

Sefton LDSAF return (2014)

St Helens

The information available from St Helens on other health conditions was included in their Joint Health
and Social Case Learning Disabilities Self-Assessment Framework return (2014). They reported a total of
944 patients in with a learning disability so prevalence is provided in table 24 below. Over half of the
patients with a BMI recorded were obese and a fifth have epilepsy.

Table 24: Other health conditions for people with a learning disability in St Helens

Health condition No of people % of patients with LD

Patients with BMI recorded 551
BMI Over 30 284 51.5%
BMI Under 18.5 31 5.6%
CHD 8 0.8%
Diabetes 54 5.7%
Asthma 112 11.9%
Dysphagia 30 3.2%
Epilepsy 194 20.6%

St Helens LDSAF return (2014)

Wirral

Wirral provided some additional information on the health profile of patients with learning disabilities
registered at Wirral GP practice. The most common long term conditions for people with learning
disabilities was epilepsy (20% of the learning disability register). High numbers of patients were
overweight or obese and a fifth of the patients with a learning disability also had epilepsy.

53
Figure 9: Learning disability patients with long term conditions in Wirral

500
438
450
400
350 318
300
250
200 182
152
150
100
50 23
0
Epilepsy Asthma Hypertension Diabetes Coronary Heart
Disease

Source: Wirral Local Authority and CCG

Table 25: Other health conditions for people with a learning disability in Wirral

Condition Number of LD Patients % of patients with LD

Epilepsy 438 20
Asthma 318 15
Hypertension 182 8
Diabetes 152 7
Coronary Heart Disease 23 1

Source: Wirral Local Authority and CCG

54
Figure 10: BMI Monitoring of patients with LD (aged 18+) Wirral

500
450
400
350
300
250
200
150
100
50
0
Underweight Healthy Overweight Obese Severely Morbidly Result Not
Weight Obese Obese Stated

Source: data provided by Wirral LA

Guidelines: Access to care

Health Action Planning and Health Facilitation for people with learning disabilities: good practice
guidance (DH, 2008a), describes and clarifies good practice in relation to health facilitation and health
action planning – how people can be supported to access the health care they need from primary care
and other NHS services. It supports localities to make progress on this and on reducing health
inequalities experienced by people with learning disabilities.

The commissioning guide for Clinical Commissioning Groups (CCGs) note that the Health and Social Care
Act 2012 contains the first ever specific legal duties on health inequalities (IHAL, 2012). Under the Act,
CCGs have a duty to have regard to the need to reduce inequalities in access to health services and the
outcomes achieved for patients. They have further duties around integration of health services with
social care and other health related services where they consider this would reduce inequalities.

The Commissioning Guide sets out the reasonable adjustments needed to improve access to care for
those with learning disabilities (IHAL, 2012). It is noted that reasonable adjustments include removing
physical barriers to access but importantly also include making whatever alterations are necessary to
policies, procedures, staff training and service delivery to ensure that they work equally well for people
with learning disabilities. Links are provided to accessible information on health at www.easyhealth.org
and www.apictureofhealth.southwest.nhs.uk . The authors emphasise that commissioners should
ensure providers implement reasonable adjustments including the use of accessible information in all
health services (IHAL, 2012).

Guidelines on improving access to health checks and screening in primary care are described on the
following pages in Sections 3.2 and 3.3. The Commissioning Guide mentions other primary care services

55
where action is needed, noting that CCGs should ensure that the needs of people with learning
disabilities are reflected in contracting for Improving Access to Psychological Therapies (IAPT) and
community podiatry services (IHAL, 2012).

NHS England is responsible for the commissioning of other primary care services such as GP out of hours
services, primary dental services, community pharmacy, primary ophthalmic services and audiology,
although IHAL note that specialist learning disability services often play a role in enabling people to
access these services (IHAL, 2012). IHAL provide a link to an eye care pathway for adults and young
people with learning disabilities, available at: www.locsu.co.uk/enhanced-services-
pathways/community-eye-care-pathway-for-adults-and-young-pe

Other considerations summarised in the Commissioning Guide included ensuring access to:
 Integrated continence services.
 Dysphagia services.
 End of life care.
 Wheelchair services.
 Pain recognition and management. Social and health care commissioners can ensure that joint
commissioning allows for support workers to be trained to recognise potential problems and
take action.
 Postural care. It should not be assumed that changes in body shape are inevitable for people
who have movement difficulties. They need access to services, equipment and training to
support the long term management of their body shape.
 Medication reviews. The need for regular medication reviews was highlighted. This would result
in important cost savings, as well as being beneficial to the individuals concerned. People with
learning disabilities are often on a large amount of medication which may not always be
effective.
(IHAL, 2012)

56
 Guidelines: Tackling the Determinants of Health Inequalities

Potential solutions can be identified by examining the determinants of health inequalities, to which
people with learning disabilities are more likely to be exposed. These have been identified by Emerson
et al (2012) as follows:

 Reduce the exposure to social determinants of poor health, including poverty, poor housing,
unemployment, social isolation and discrimination;

 Improve early identification of illness, for example by improving the uptake of health checks
and screening;

 Improve the health literacy of people with learning disabilities and their carers;

 Enhance the knowledge and skills of healthcare workers in working with people with learning
disabilities.

 Make ‘reasonable adjustments’ wherever possible; for example longer appointment times
and more accessible health promotion information.

 Monitor progress towards eliminating inequalities faced by those with learning disabilities.

3.2 HEALTH CHECKS

As detailed in Section 3.1 above, people with learning disabilities have significantly poorer health than
their non-disabled peers. This is partly due to difficulties in identifying ill health among people with
learning disabilities and problems with access to services (Glover et al, 2012).

In 2006, the Disability Rights Commission recommended the introduction of annual health checks for
those with learning disabilities, to help to improve the identification of illness amongst this group.GP
practices in England can now provide health checks for adults with learning disabilities as part of a
Directed Enhanced Service scheme. Originally introduced in 2008-2009 it has been subsequently
extended each year, most recently up until March 2015 (PHE (2014) The Uptake of Learning Disability
Health Checks 2013 to 2014).

A Directed Enhanced Service (DES) is currently in place to support the provision of health checks. The DES
only includes those known to social services, but some areas have offered health checks to everyone on
the QOF register (NHS England, 2013).

The introduction of health checks in 2008/09 has been one of the most important ‘reasonable
adjustments’ made by primary health care services in an attempt to address the health inequalities faced
by people with learning disabilities and detect unmet health need. They are a start in meeting the
requirements of the Disability and Equality Act 2010 (IHAL, 2012 commissioning guide). However,
although there has been an increase in uptake over time, the latest figures for 2011/12 show that there
were still only just over half (52.8%) of those eligible receiving the checks (Emerson et al, 2012).

57
It is not compulsory for GP practices to conduct the learning disability health checks and they can choose
to opt-in or opt-out of the scheme. Checks should be undertaken by an appropriately trained provider
and based on a protocol that included:

 a review of physical and mental health with referral through the usual practice routes if health
problems are identified including:
 health promotion
 long-term illness and systems enquiry
 physical examination
 epilepsy
 dysphagia
 behaviour and mental health
 a specific syndrome check
 a check on the accuracy of prescribed medications
 a review of coordination arrangements with secondary care
 a review of transition arrangements where appropriate (PHE, 2014)

NICE (2015) recommends using a standardised template, such as the Cardiff health check questionnaire
(RCGP 2010) to structure health checks.

Local data

Nationally in England, of those known to either the GP or social services as having a learning disability,
less than half (44.2%) had a health check during 2013-2014 (PHE 2014, figure 11) Merseyside (54.7%),
Cheshire, Warrington and Wirral (62.2%) had coverage of health checks higher than the England average.
In England 2013-2014 on average 64.4% of GP practices participated in the health checks scheme; this
proportion was higher in Merseyside (75.3%) and Cheshire, Warrington and Wirral (83.6%) (PHE 2014,
figure 11)

Figure 11: Coverage by QOF of learning disability health checks for NHS England area teams, 2013 to
2014.

Source: PHE, 2014

58
Figure 12. Practice participation in learning disability health check scheme, NHS England Areas Teams,
2013 to 2014

Source: PHE, 2014

There are obstacles to the uptake of health checks, notably the fact that there are estimated to be a large
number people with learning disabilities who are not known to the authorities and do not appear on any
registers (see Section 2.). Communication difficulties are another obstacle.

Nevertheless, the IHAL stated that the provision of health checks is probably the most important
Reasonable Adjustment that can be made by CCGs through GPs, to ensure that people with learning
disabilities receive a reasonable acceptable standard of primary medical care (Glover et al, 2012).

Data on health checks by local authority showed seven of the Cheshire and Merseyside areas were
performing better than the England average with Knowsley having the highest coverage on health checks
in 2014 (75.6%). Warrington had the lowest; however, this was still similar coverage to the England
average at 46.3% (see figure 13a). Since the publication of this data, work has been undertaken locally to
improve the uptake of health checks through a designated learning disability nurse. Data on health check
uptake at the CCG level is also provided in figure 13b. Health Check uptake is lowest in South Cheshire
CCG (34.4%); this low coverage is not evident at local authority level because of the high uptake in
Eastern Cheshire (81.1%).

59
Figure 13a: Proportion (%) of eligible adults with a learning disability having a GP health check by Local
Authority 2013/14

Source: PHE Learning Disability Profiles, 2014

60
Figure 13b: Proportion (%) of eligible adults with a learning disability having a GP health check by CCG
2013/14

ST HELENS 46.9%
SOUTHPORT AND FORMBY 44.9%
SOUTH SEFTON 43.0%
LIVERPOOL 56.9%
KNOWSLEY 74.6%
HALTON 52.1%
WIRRAL 73.0%
WEST CHESHIRE 54.9%
WARRINGTON 46.3%
VALE ROYAL 73.1%
SOUTH CHESHIRE 34.4%
EASTERN CHESHIRE 81.1%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

Health Check Coverage

Source: IHAL, 2014

3.3 SCREENING

Access to health screening and health promotion may be significantly poorer for those with learning
disabilities, especially amongst those with more severe learning disabilities (e.g. in residential care) and
for those who do not use learning disability services. For example, lower rates of breast self-examinations,
mammography, assessments for vision and hearing impairments and routine dental care amongst people
with learning disabilities have been reported (Emerson et al 2012).

The data from Joint Health and Social Care Self-Assessment Framework in 2014 shows significant
variation in participation rates across the three cancer screening programmes. The bowel screening
programme had the highest national uptake, with 41.6% of people with learning disabilities having been
screened (up from 28.1% in 2012/13). This is compared with 50.4% coverage for the general population.
Breast cancer screening had the second highest coverage for people with learning disabilities, with 39.0%
of women with learning disabilities being screened compared to 55.9% of the general population.
Cervical screening uptake was the lowest with only 29% of women with learning disabilities having
cervical smears compared to 69.1% for the population as a whole (PHE 2015), making reasonable
adjustments to cancer screening.

CERVICAL CANCER SCREENING

Cervical screening should be done every three to five years (depending on age) for women aged 25-64
who have not had a hysterectomy. Screening data for 2014 is provided in the LDSF returns. Figure 14
below includes data for the Cheshire and Merseyside LAs. Not all LA areas were able to provide data. The

61
LDSAF was not available for Warrington and Wirral provided their data in other age categories which are
provided below.

Screening of all women eligible was relatively comparable across all areas and varied from 67.4% in
Halton to 78.1% in Cheshire East. However screening rates were considerably lower and more varied in
women with learning disabilities. In most areas uptake in women with LD was less than half uptake in all
women. Halton had the lowest cervical cancer screening rates in women with LD (18%) and Cheshire East
the highest (50.4%).

Figure 14: Proportion of women screened for cervical cancer in prescribed period

90
All eligible women Eligible women with LD
78.1
80
71.7 70.8
67.4 68.5
70

60
50.4
50 44.7
Per cent screened

40
30.2
30 25.9
22.8
18
20

10

0
Cheshire East Cheshire Halton Knowsley Liverpool* Sefton St Helens Warrington* Wirral*
West &
Chester*

Source: Individual LDSAF 2014 returns. * denotes areas unable to provide any of complete data, these do not represent 0%
screening rates.

In Wirral, LDSAF 2014-15 data show lower uptake of all screening in people with learning disabilities. In
2014-15 cervical cancer screening uptake was lower in both age groups and particularly in the older ages
(50-64 year of age 29.3% compared to 72.2% of all women). Screening rates have increased in all groups
in the last year.

62
Table 26: Cervical Cancer Screening uptake for women with Learning Disability, Wirral, 2013-2015

Cervical Cancer Screening 2013/14 2014/15

Eligible Screening Eligible Screening
population population
Women aged 25-49 - all women 48662 60.1% 64588 64.3%
Women aged 25-49 – with LD 388 30.7% 391 35.8%
Women aged 50-64 - all women 26704 70.6% 35219 72.2%
Women aged 50-64 – with LD 137 21.2% 184 29.3%

Data provided by Wirral LA, 2015

BREAST CANCER SCREENING

Breast cancer screening is offered to all women ages 50-69 every three years. Screening data for 2014 is
provided in the LDSF returns. Figure 14 below includes data for the Cheshire and Merseyside LAs. Not all
LA areas were able to provide data. The LDSAF was not available for Warrington and Wirral provided their
data in other age categories which are provided below.

Uptake of screening in all women (including those with LD and those without) varied across areas with
Cheshire East having the highest uptake (75.6%) and lowest in Wirral (34.5%). Uptake of breast cancer
screening in women with LD was lower than in all women, but the difference between groups not as
dramatic as that of cervical cancer screening. Cheshire East had the highest uptake of breast cancer
screening in women with LD (58%) and Wirral the lowest (33.5%).

Figure 15: Per cent of eligible women screened for breast cancer in last three years

All eligble women Eligible women with LD

80 75.6
73.4 73.2
67.7 68.5
70

60 58 57.1
54.8 53.7 54.6
50
Per cent screened

50

39
40
34.533.5

30

20

10

0
Cheshire East Cheshire Halton Knowsley Liverpool Sefton* St Helens Warrington* Wirral
West &
Chester*

Source: Individual LDSAF 2014 returns

63
BOWEL CANCER SCREENING

Bowel cancer screening is offered to men and women aged 60-69 every two years. Uptake in all people
varied somewhat across all areas, varying from 60.9% in Cheshire East to 49% in Wirral. Screening uptake
in people with learning disabilities was similar, and in some cases higher than in the general population,
but varied considerably between areas. The highest uptake was in Cheshire East (77.2% and was higher
than screening of all people); uptake was lowest in Wirral where just over a third of eligible people with
learning disabilities were screened (39.4%).

Figure 16: per cent of persons screened for bowel cancer in last two years

90
All eligible people Eligible people with LD
80 77.2 76.5

70 65.5
60.9 62.4
60.2 60.1
Per cent screened

60 55.7 55.2
52.6
50 49
50
39.4 39.4
40

30

20

10

0
Cheshire Cheshire Halton Knowsley Liverpool Sefton* St Helens Warrington* Wirral
East West &
Chester*

Source: Individual LDSAF 2014 returns

64
 Guidance: Screening

The guide for Clinical Commissioning Groups (IHAL, 2012) notes that with the right support, most
people with learning disabilities can access health screening services that are available to the
general population. While NHS England will be commissioning screening services, CCGs will
commission specialist learning disability services which often provide support both to people with
learning disabilities and screening/health promotion services to enable access. Reasonable
adjustments regarding the three national cancer screening programmes have been collated by IHAL
and are available at:

www.improvinghealthandlives.org.uk/publications/1126/Making_Reasonable_Adjustments_to_Can
cer_Screening

CCGs should ensure that data on access to disease prevention and screening by people with learning
disabilities compared to the general population is collected (IHAL, 2012 - quoting Health Self-
Assessment [SAF] indicators).

Recommendation from this report: Develop access to GP clinical systems so that GP data on
screening and disease management for those with learning disabilities can be compared and
monitored across each CCG.

Locally prepared ‘easy read’ materials on issues such as breast screening should be widely available.

3.4 CONTRACEPTION AND SEX EDUCATION

CONTRACEPTION

As with cervical and other types of screening (discussed in the previous section), lower rates of
contraceptive advice and smear tests amongst those with learning disabilities have been reported in the
NHS Information Centre study into access to healthcare (NHS IC, 2010). The NHS IC suggested that this is
possibly due to an assumption that patients with learning disabilities are not likely to be sexually active;
or that they are not able to make choices relating to contraception; or GPs may not feel able to raise
sexual health issues with patients who have learning disabilities.

Contraceptive use for women with learning disabilities involves much greater use of long term methods
such as depo injection, oral contraceptive, intrauterine device or sterilisation and significantly less use of
barrier methods compared to the general population. They may be prescribed contraception or even
sterilised even when they are not sexually active or are past child bearing age (Emerson et al, 2012).

SEX AND RELATIONSHIPS EDUCATION:

The University of Ulster and Family Planning Association (2006) noted that a lack of acknowledgement of
the sexuality of people with learning disabilities means their needs are being fundamentally ignored. The
importance of addressing the sex education needs of young people with learning disabilities was
highlighted by a Barnardo’s and University of Coventry report in 2015 (Franklin, Raws and Smeaton 2015)
which found that young people with learning disabilities are vulnerable to sexual exploitation due to
factors that include overprotection, social isolation and society refusing to view them as sexual beings.

65
The report recommended the need for better education and information on sex and relationships and
exploitation.

A children’s learning disability nursing team in Leeds audited the amount of referrals for “inappropriate
sexual behaviour” (Simpson et al, 2010). The results highlighted that in most cases, children with learning
disabilities received little or no sex and relationships education or support. The audit also showed that
approaches are usually reactive rather than proactive. The team liaised with professionals in education,
public health and healthy schools advisers, and discovered that few staff were addressing the sexual
health needs of this group. The majority of staff envisaged great difficulties in addressing these needs.
Some of the available teaching resources were outdated and staff did not have the time, commitment or
confidence to deliver them. The team developed a resource to support professionals in delivering sex and
relationship education (NHS Leeds, 2009).

A three year research project undertaken by the University of Leeds looked at relationships and sexuality
for young people with learning disabilities (University of Leeds, 2009). Their findings included:

• Everybody felt sex education should be better. Sex education often only talks about what sex is, rather
than having sex in a relationship, or to feel good.

• Most people did not know much about puberty and pregnancy.

• It was difficult to get accessible information. No parents had been given information without asking for
it. They “had to fight for it”. Parents and teachers said young people really need accessible information
that they could take away.

• Some young people with learning disabilities think talking about relationships and sex could get them
into trouble. Some parents and professionals think young people with learning disabilities shouldn’t have
relationships or sex. Parents said some people think young people with learning disabilities don’t need
information.

• Many teachers said that sex education doesn’t always get taught in special schools. Focus groups with
teachers found that sex education in schools is often done on an ‘as-and-when-needed’ basis with
individuals, rather than structured classes or programmes. They said that sex education needs to be
treated more importantly by schools and by the Government.

There is an obvious need for relationships education and contraceptive advice, but this need is hard to
meet, often due to resistance from parents. Some areas have considered developing a ‘relationships
policy’.

3.5 LIFESTYLE

Emerson et al (2012) carried out analysis of the Millennium cohort study, which tracks children born
between 2000 and 2002. They found that more than half of seven year olds with learning disabilities (56%)
never do sport/exercise, compared to a quarter (25%) of those with no learning disability.

Amongst adults with learning disabilities, a literature review by Emerson et al (2012) reported that some
risk-taking behaviour has been found to be lower amongst adults with learning disability, such as smoking
and drinking alcohol (Emerson et al, 2012). However, they found that:

66
  rates of smoking are considerably higher among adolescents with mild learning disabilities.

 obesity rates tend to be higher amongst those with learning disabilities. The NHS Information
Centre study into access to healthcare also noted that people with learning disability have been
found to have higher rates of obesity, possibly associated with relative under activity and poor
diet, (NHS IC, 2010).

 4 in 5 adults with learning disabilities (80%) have lower levels of physical activity than
recommended, compared to 53-64% amongst the general population.

LOCAL DATA

In Knowsley, a health needs assessment was carried out for adults aged over 18 years with a learning
disability registered with general practice on 31st December 2008 (Oyinloye and Lee, 2010). It reported
that:

 one in ten adults with learning disabilities use tobacco. This is less than the Knowsley average of
one in four adults and is consistent with other research findings.
 those with learning disabilities were more likely to be obese (BMI>30) than the total Knowsley
population (40.5% compared to 20%)
 they were also more likely to be underweight (BMI<20) than the total Knowsley population (8.7%
compared to 2%).

Data on BMI at a local authority level, where available, is included in the GP data above.

3.6 HOSPITAL ADMISSIONS

People with learning disabilities have different patterns of hospital admissions compared to the general
population. The proportion of admissions to general hospital which happen as an emergency are
substantially larger than for people who do not have learning disabilities (50.0% vs. 31.1%) (IHAL, 2013).

In Lincolnshire, an analysis of service activity data confirmed that emergency admissions to hospital and
A&E attendance in adults with learning disabilities were greater than the Lincolnshire average, whilst
elective admissions were lower (Weston et al, 2012). They found higher levels of admission amongst
people with learning disabilities for some conditions, for example diseases of the digestive system
resulted in 14% of admissions for the general population and 18% for people with a learning disability'
(Weston et al, 2012).

The authors felt that these differences may be explained by the identified barriers to services, diagnostic
overshadowing, low rate of annual health checks in primary care, and other factors which combine to
increase the burden of disease in this vulnerable population.

Once people with learning disabilities access the hospital care system, they face inequalities in their care.
As mentioned in Section 1.3 above, Mencap’s Death by Indifference report outlined six case studies of
people with learning disabilities who were believed to have died unnecessarily as a result of receiving a
lower standard of healthcare than afforded to the general public (Mencap, 2007). Issues requiring
attention included lack of basic care, poor communication and failure to recognise pain. The report
prompted an independent inquiry into access to healthcare for people with learning disabilities,
‘Healthcare for All’, which reported in July 2008 (DH, 2008).

67
Hospital admissions that should not happen

Ambulatory care sensitive conditions (ACSCs) have been defined as conditions which can usually be
looked after without needing people to go into hospital (Glover and Evision, 2013). IHAL carried out a
study of hospital admissions of people with learning disabilities for these conditions. The study found that
about 8% of hospital admissions for people with learning disabilities are emergencies that might be
preventable, compared to around 5% for those without learning disabilities. The commonest cause for
people with learning disabilities is convulsions and epilepsy. Other common causes for those with
learning disabilities included diabetes, constipation and influenza/pneumonia (Glover and Evison, 2013).

Locally collected data

Detailed hospital admissions data was not available from HES within the timeframe of this report and is
no longer available on IHAL. Data on hospital data comes from the LDSAF returns.

The LDSAF returns provide absolute numbers of the people who have attended hospitals in 2013-14. Data
were unavailable for Warrington and Wirral and incomplete for Halton and Knowsley. In absolute
numbers Liverpool saw the highest number of inpatient spells, outpatient attendances and A&E
attendances. However St Helens has the highest number of patients with learning disabilities attending
A&E more than three times.

Table 27: numbers of learning disability patients attending as inpatients, outpatients and A&E. 2013-
2014

Cheshire Cheshire Halton* Knowsley* Liverpool Sefton St

East West & Helens
Chester
Hospital spells - 326 98 282 10633 760 11 481
inpatients.
Persons with LD3
Hospital 831 323 361 3167 1030 909
attendances -
outpatients.
Persons with LD4
A&E 583 142 834 203 702
attendances.
Persons with LD5
No people 43 10 62 14 85
attended A & E
more than 3
times. Persons
with LD6

* Incomplete data were provided on the LDSAF returns.

3
How HOSPITAL PROVIDER SPELLS of inpatient Secondary Care were been received under any consultant specialty EXCEPT the psychiatric
specialties (Specialty codes 700-715) between 1st April 2013 and 31st March 2014? Persons with LD
4
How many Secondary Care Outpatient ATTENDANCES were been received by people under any consultant specialty EXCEPT the
psychiatric specialties (Specialty codes 700-715) between 1st April 2013 and 31st March 2014? Persons with LD
5
A & E attendances How many ATTENDANCES at Accident & Emergency between 01 April 2013 - 31 March 2014? Persons with LD
6
A & E people with 3 or more attendances How many PEOPLE have attended Accident & Emergency 01 April 2013 - 31 March 2014 more
than 3 times? (only required for persons with LD) Persons with LD

68
Guidelines: secondary care

The CCG Commissioning Guide notes that CCGs should ensure that healthcare providers have put in
place systems to regularly assess and monitor the quality of the service they provide (IHAL, 2012).
Amongst other things, they need to avoid unlawful discrimination through making reasonable
adjustments where applicable. Requirements would include ensuring that the following are in place:

 A named Board level Executive Lead with responsibility for learning disabilities;
 An acute liaison nurse function;
 A ‘care pathway’ for people with learning disabilities which includes pre-admission and
discharge planning, a risk assessment and use of a ‘Patient Passport’ (e.g. see Brodrick et al,
2011);
 Use of a recognised pain identification tool ( http://www.disdat.co.uk/);
 Care co-ordinator arrangements, so that the individual and their family have an identified
person they can talk to;
 A learning disability resource pack and communication aids available on each ward;
 Learning disability awareness training and Mental Capacity Act training in place for all
appropriate staff;
 An exemption clause in Trust DNA policies for people with learning disabilities as they are
vulnerable patients, and there may be good reasons why they do not attend appointments;
 Access to Paediatric Neuro-disability specialist care for children with profound and multiple
learning disabilities;
 Changing places toilets;
 The use of Summary Care Records (SCR) to ensure that records are available to out of hours
services and acute hospital trusts.
(see p. 22, IHAL, 2012, for full list)

Based on recommendations in Healthcare for All (DH, 2008), Monitor’s Compliance Framework set out
six criteria for meeting the needs of people with learning disability:

1. Mechanism in place to identify and flag patients with learning disabilities, and protocols that
ensure pathways of care are reasonably adjusted to meet their health needs.
2. Readily available and comprehensible information to patients with learning disabilities about
treatment options, complaints procedures and appointments.
3. Protocols in place to provide suitable support to family carers.
4. Protocols in place to routinely include training on providing healthcare to patients with learning
disabilities for all staff.
5. Protocols in place to encourage representation of people with learning disabilities and their
family carers.
6. Protocols in place to regularly audit practices for patients with learning disabilities and to
demonstrate the findings in routine public reports.
(Monitor, 2013; IHAL, 2012, p. 25)

Glover and Evision identified four key messages from their report into ambulatory care sensitive
conditions (ACSCs) as follows:

1. The study suggested weaknesses in primary care for people with learning disabilities. CCGs

69
 need to act to check whether and to what extent this is a problem in their area and to take
necessary action to meet their statutory obligations to address it.

2. The NHS Information Centre could produce annotated hospital episode and mortality data
sources, using GP learning disability register data to report how often people with learning
disabilities go into hospital. This would allow national benchmarks to be produced.

3. In addition to monitoring, remedial action is needed. At the least, every in-patient unit caring
for NHS patients should establish a routine Emergency ACSC notification to go with every
discharge of a patient with learning disabilities admitted this way. This would advise the GP and
the community learning disabilities team that a patient had been discharged with a condition
suggestive of a requirement for review of their Health Action Plan.

4. In the specific situation of patients with learning disabilities and convulsions, emergency
admissions should be seen as a danger warning signal. This event should trigger a review of the
long term care of their epilepsy by a specialist neurologist.
(Glover and Evison, 2013)

Further guidelines on the care of people with learning disability in general hospital settings can be found
in a report from Northern Ireland (GAIN, 2010)

There are several guidelines relating to learning disability nursing, including:

 Good practice in learning disability nursing, provides good practice guidance to support learning
disability nurses to make a major contribution to the health and wellbeing of people with a
learning disability in the future.
http://www.hscbusiness.hscni.net/pdf/DH_Good_practice_in_learning_disability_nursing-
2007_pdf.pdf

 Learning from the past – setting out the future: Developing learning disability nursing in the
United Kingdom (RCN, 2011), sets out the College’s position to people with learning disabilities.

 In 2011, the RCN produced a report aiming to support nurses in primary and secondary care,
who are trained in fields other than learning disabilities, to deliver high quality health care to
people with learning disabilities. It highlights the specific health needs of people with learning
disabilities and supports staff in making their services more accessible.
Meeting the health needs of people with learning disabilities (RCN, 2011).
http://www.rcn.org.uk/__data/assets/pdf_file/0004/78691/003024.pdf

3.7 MENTAL HEALTH

Between 25 and 40% of people with learning disabilities also suffer from mental health problems.
Amongst children with learning disabilities, 36% have psychiatric disorders, compared to 8% amongst
children with no learning disability (Emerson et al, 2012, literature review and Foundation for People with
Learning Disabilities [online]). Of children with autism, 71% have at least one co-occurring mental health
problem, while 40% have two or more (National Autistic Society 2011).

70
As noted by the Foundation for People with Learning Disabilities (no date, online), children and young
people with learning disabilities are much more likely than others to live in poverty, to have few friends
and to have additional long term health problems and disabilities such as epilepsy and sensory
impairments. These factors are all associated with mental health problems and have been discussed in
the relevant sections of this report.

The Foundation for People with Learning Disabilities summarised the statistics available relating to
learning disability and mental health as follows:

 People with learning disabilities demonstrate the complete spectrum of mental health problems,
with higher prevalence than found in those without learning disabilities;
 The prevalence of dementia is much higher amongst older adults with learning disabilities
compared to the general population (21.6% vs 5.7% aged 65+);
 Prevalence rates for schizophrenia in people with learning disabilities are approximately three
times greater than for the general population (3% vs 1%);
 Reported prevalence rates for anxiety and depression amongst people with learning disabilities
vary widely, but are generally reported to be at least as prevalent as the general population;
 Challenging behaviours (aggression, destruction, self-injury and others) are shown by 10%-15%
of people with learning disabilities, with age-specific prevalence peaking between ages 20 and 49
(see next section on ‘Challenging behaviour’).

(Foundation for People with Learning Disabilities [online])

Of adults with autism in England, nearly two-thirds do not have enough support to meet their needs. At
least one in three adults with autism experience severe mental health difficulties due to a lack of support
(National Autistic Society, 2013).

Access to care: A person with a learning disability who has a mental illness should be able to access
services and be treated in the same way as anyone else, with reasonable adjustments being made in
accordance with the Disability Discrimination Act (2005), the Disability Equality Duty (2006) (DH, 2009a)
and more recently, the Disability and Equality Act 2010.

However, it can be difficult to identify the prevalence of depression and anxiety among people with
learning disabilities. Many people with learning disabilities are not able to express their feelings easily in
words, which can mask the clinical presentation of a mental health problem and cause difficulty in
making an accurate diagnosis (DH, 2009a). The Department of Health note that over recent years, more
mainstream assessment tools for mental health have been adapted for people with a learning disability
and specialist tools have also been developed.

The Green Light Toolkit was developed to help mental health services to assess the standard of
accessibility of services to people with learning disabilities (Foundation for People with Learning
Disabilities, 2004).

The Department of Health produced a positive practice guide for Improving Access to Psychological
Therapies (IAPT) (DH, 2009a). They noted that commissioners of mental health services need to work
with commissioners of learning disability services to ensure that the development of joint local protocols
is an accepted requirement and that cohesion across IAPT services exists. Several ‘reasonable

71
adjustments’ necessary to make IAPT accessible to those with learning disabilities were highlighted,
including the provision of longer sessions than usual, to take account of the person’s varying levels of
understanding and need (DH, 2009a). There is a need to make data available on numbers accessing
psychological therapies (IAPT) for people with learning disabilities.

Self-help: A series of very accessible, easy read information for people with mental health problems and
learning disabilities has been produced by the Royal College of Psychiatrists' Faculty of the Psychiatry of
Learning Disability and the Leicestershire Partnership NHS Trust (RCPsych, 2010a). There is a separate
guide for each mental health condition (anxiety, depression, etc.).

Children/CAMHS

For young people with learning disabilities and mental health problems, services may be commissioned
as part of the general Child and Adolescent Mental Health Services (CAMHS) (IHAL, 2012). It is possible
that CAMHS does not cater for people with learning disability unless the individual also has a mental
health condition. There is a need to collate CAMHS commissioning arrangements across CCGs, to identify
what tier one to three CAMHS services are providing for children with learning disabilities in each area
and well as defining specialist commissioning tier 4 services.

Local data: no local data were available

Adults

In 2013-14 there were 54 people with a learning disabilities in Cheshire West and Chester who also had a
mental health condition (information provided by the LA).

Data obtained in May 2013 for the Wirral showed that there were 67 people with a learning disability
currently known to social services who had ever had a mental health problem. In Liverpool, there were 68
mental health clients who were also identified as having a learning disability at their last review (2012/13).
Data systems do not record the type of mental health problem.

Data from the community learning disability team from 5 Boroughs Partnership NHS Trust on numbers
accessing community mental health services is shown in Table 28 below. This data was obtained near the
project completion date and requires further exploration in future, including how many contacts are for
IAPT. Comparative data from Mersey Care NHS Trust is needed to give a more complete picture of access
across Merseyside and to enable the calculation of rates.

Table 28: Learning Disability (LD) Community Service at 5 Boroughs Partnership NHS Trust, Contacts,
April 2013.

Service St. Helens Halton Knowsley Warrington Liverpool

LD Community 457 290 359 457 16

Outpatients 279 218 60 279 4

Source: St. Helens CCG contact

72
Guidelines: Mental health

The commissioning guide for Clinical Commissioning Groups (IHAL, 2012) states that the full range of
mental health services should be accessible to people with learning disabilities and mental health
problems. Mental health and learning disability services should work together to ensure that there is a
single point of access and robust local pathways for people with overlapping needs that are delivered in
the least restrictive way possible. IHAL note that the JSNA (Joint Strategic Needs Assessments) should
include information about the needs of people with learning disabilities and mental health problems, and
Health and Wellbeing Boards should facilitate joint working. The Department of Health interim report on
Winterbourne View included an action to ‘build understanding of the reasonable adjustments needed for
people with learning disabilities who have a mental health problem so that they can make use of local
generic mental health beds’ (DH, 2012a).

The Joint Commissioning Panel for Mental Health are writing good practice guidance on the
commissioning of mental health services for people with learning disabilities (mentioned in IHAL 2012).

The Foundation for People with Learning Disabilities has produced a ‘Green light pack’ which is a
framework and self audit toolkit for improving mental health support services for people with learning
disabilities. It provides a picture of what services should be aiming to achieve, including:

 making information ‘easy to read’.

 helping young people who have mental health problems and learning disabilities to get the
support they need.
 having some beds in the local mental health unit that are just for people with mental health
problems who have learning disabilities.
 supporting people with mental health problems who have learning disabilities to use the local
mental health drop-in service.
 having a local house where people can go to stay if they need a break away from home because
of their mental health problems, with support from staff who know the best ways to help them.
 There are more examples in Sections 3 and 4 of the green light pack (Foundation for People with
Learning Disabilities, 2004).

Improving Access to Psychological Therapies (IAPT): Commissioners of mental health services need to
work with commissioners of learning disability services to ensure that the development of joint local
protocols is an accepted requirement and that cohesion across IAPT services exists (DH, 2009a).
Necessary ‘reasonable adjustments’ were highlighted.

For children and young people, there are two publications that deal with service requirements for those
with learning disability and mental health problems:

A set of standards for measuring the delivery of Tier 3 Learning Disability CAMH services by QINMAC
(Quality Improvement Network for Multi-Agency CAMHS). The QINMAC and QINMAC-LD networks were
merged in 2010, and both sets of standards were integrated into a single edition. The revised standards
highlight the expectation that services for vulnerable groups, such as children with a learning disability,
should now be part of all mainstream CAMHS: These standards describe the quality of care that young
people with learning disabilities and autistic spectrum disorders should receive whether or not they are
referred to a specialist LD CAMHS team (RCPsych 2010).

A Toolkit for Clinicians developing Mental Health Services for Children and Adolescents with Learning
Disabilities in collaboration with the National CAMHS Support Service (RCPsych, 2009):

The NICE autism report (NICE, 2012) also provides guidance on interventions for coexisting mental
disorders (http://publications.nice.org.uk/autism-recognition-referral-diagnosis-and-management-of-

73
adults-on-the-autism-spectrum-cg142/guidance#interventions-for-autism

NICE guidance on ‘mental health problems in people with learning disability’ is in development, with an
expected publication date of 2016.

Recommendations from this report:

Monitor the numbers of people with learning disability admitted to hospital for mental health problems.
Data on those seeing their GP for mental health problems should be available through annual health
check data. Data on numbers, what type of mental health problem and access to treatments such as IAPT
should be available from community learning disability teams.

3.8 CHALLENGING BEHAVIOUR

Challenging behaviour is sometimes displayed by people with learning disabilities. This behaviour is not a
health condition and often results from an interaction of individual and environmental factors. NICE have
recently produced new guidance on challenging behaviour and learning disability. NICE describe
challenging behaviour as:

“Some people with a learning disability display behaviour that challenges. 'Behaviour that
challenges' is not a diagnosis and is used in this guideline to indicate that although such
behaviour is a challenge to services, family members or carers, it may serve a purpose for the
person with a learning disability (for example, by producing sensory stimulation, attracting
attention, avoiding demands and communicating with other people). This behaviour often results
from the interaction between personal and environmental factors and includes aggression, self-
injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour. It can also
include violence, arson or sexual abuse, and may bring the person into contact with the criminal
justice system” (NICE 2015)

The Mansell Report on challenging behaviour (see Section 1.3 above, DH 2007a) used the definition
developed by Emerson (1995):

‘The phrase “challenging behaviour” is therefore used in this report to include people whose
behaviour presents a significant challenge to services, whatever the presumed cause of the
problem. Wherever it is used, it includes behaviour which is attributable to mental health
problems. As a working definition, that proposed by Emerson (1995) has been used:

“Severely challenging behaviour refers to behaviour of such an intensity, frequency or duration

that the physical safety of the person or others is likely to be placed in serious jeopardy, or
behaviour which is likely to seriously limit or delay access to and use of ordinary community
facilities.”.’.

Prevalence

Between 10%-15% of people with learning disabilities have challenging behaviours (including aggression,
destruction and self-injury (Emerson et al, 2012 literature review,) and rates are higher in teenagers and
people in their early 20s, and in particular settings (for example, 30–40% in hospital settings; NICE 2015).

People with learning disabilities and challenging behaviour are part of a group with complex needs. To
inform commissioning, there is a need for information on how they are managed, with data on inpatient
use and outpatient out of area use. The NICE guidance on challenging behaviour and learning disability

74
(NICE, 2015) noted adult and child health and social care teams should work jointly to provide
assessment and services to young people and diagnosis and management need to be reviewed through
transition between services. NICE (2015) suggest there should be clarity about who is the lead clinician to
ensure continuity of care.

Challenging behaviour is more common in certain care environments including those with “limited
opportunities for social interaction and meaningful occupation, lack of choice and sensory input or
excessive noise. It can also be more common in care environments that are crowded, unresponsive or
unpredictable, those characterised by neglect and abuse, and those where physical health needs and pain
go unrecognised or are not managed” (NICE 2015).

If challenging behaviour is not dealt with properly, it can result in high costs, with some individuals for
example having to be cared for in secure units. Early identification and intervention and the provision of
adequate services to meet individual needs is crucial. Inappropriate or inadequate care can result in
escalating the challenging behaviour. In children, individuals might be flagged as ‘had contact with the
police’ or ‘had an ASBO (anti-social behaviour order)’. It is necessary to consider how these individuals
can be targeted for the support they need.

Guidelines: Challenging Behaviour

NICE have recently released new guidance which offers evidence-based advice on prevention and
interventions for children, young people and adults with a learning disability and behaviour that
challenges (NICE 2015).

The NICE 2015 guidance set out some general principles of care:
 When providing support and interventions for people with a learning disability and behaviour
that challenges, and their family members or carers:
o take into account the severity of the person's learning disability, their developmental
stage, and any communication difficulties or physical or mental health problems
o aim to provide support and interventions:
 in the least restrictive setting, such as the person's home, or as close to their
home as possible, and
 in other places where the person regularly spends time (for example, school or
residential care)
o aim to prevent, reduce or stop the development of future episodes of behaviour that
challenges
o aim to improve quality of life
o offer support and interventions respectfully
o ensure that the focus is on improving the person's support and increasing their skills
rather than changing the person
o ensure that they know who to contact if they are concerned about care or interventions,
including the right to a second opinion
o offer independent advocacy to the person and to their family members or carers.

The guidelines make it clear that carers and provider organisations should ensure that teams providing
care have prompt and coordinated access to specialist assessment, support and intervention services
which can provide advice, supervision and training from a range of staff to support the implementation of
any care or intervention. Support should come from teams including psychologists, psychiatrists,

75
behavioural analysts, nurses, social care staff, speech and language therapists, educational staff,
occupational therapists, physiotherapists, physicians, paediatricians and pharmacists.

The guidance also acknowledges the importance of early identification of behaviour that challenges and
advises that carers and professionals should pay attention and record factors that may increase the risk
of behaviour that challenges developing gradually. Effective assessment of behaviour that challenges
should remain person-centred and be regularly reviewed.

The guidance made recommendations around personalised psychological and environmental

interventions for children, young people and adults that are based on behavioural principles and a
functional assessment of behaviour, tailored to the range of settings in which they spend time, and
consist of:
 clear targeted behaviours with agreed outcomes
 assessment and modification of environmental factors that could trigger or maintain the
behaviour (for example, altering task demands for avoidant behaviours)
 addressing staff and family member or carer responses to behaviour that challenges
 a clear schedule of reinforcement of desired behaviour and the capacity to offer reinforcement
promptly
 a specified timescale to meet intervention goals (modifying intervention strategies that do not
lead to change within a specified time).

Antipsychotic medication should be considered to manage behaviour that challenges only if:
 psychological or other interventions alone do not produce change within an agreed time or
 treatment for any coexisting mental or physical health problem has not led to a reduction in the
behaviour or
 the risk to the person or others is very severe (for example, because of violence, aggression or
self-injury

The guidance made recommendations about the need for further research into:

 Preventing behaviour that challenges from developing in children aged under 5 years with a
learning disability
 Interventions to reduce the frequency and extent of moderate to severe behaviour that
challenges in community settings
 Locally accessible care

Source: NICE (2015) Challenging behaviour and learning disabilities: prevention and interventions for
people with learning disabilities whose behaviour challenges (NG11).

The Mansell Report on challenging behaviour (DH 2007) concluded that ‘specialist multi-disciplinary
support teams focussed on challenging behaviour are an essential component of modern provision’.
Guidelines for CCGs relating to challenging behaviour suggest that they work with social care
commissioners to develop strategies for partnership working to prevent problems arising in the first place
and to manage them when they do (IHAL, 2012).

Early identification and links with CAMHS

Links with child and adolescent mental health services (CAMHS) are important: If the needs of those with
learning disability are not met early enough, some may develop additional mental health problems and
challenging behaviour as adults (see mental health, Section 3.5). There needs to be an understanding of
what services are defined across CAMHS for learning disability in each area.

76
3.9 MORTALITY AND AGE AT DEATH.

A study published in 2009 by Tyrer and McGrother found mortality rates amongst people with moderate
to severe learning disabilities to be almost three times higher than in the general population. Mortality
was especially high in young adults, women and people with Down’s syndrome, although the life
expectancy of those with Down’s syndrome has increased more rapidly recently, compared to those with
other types of learning disability (Emerson et al, 2012).

It was not possible for the authors to say how many of these deaths would be unexpected, as they noted
that people with learning disabilities often have significant co morbidity, such as physical impairments,
congenital heart malformations and mental disorders, which all incur a greater risk of death. However,
this would not explain all the difference (Tyrer and McGrother 2009).

The four conditions or diseases where people with a learning disability were at greatest risk of death
were:
 deaths caused by congenital abnormalities (SMR = 8560),
 diseases of the nervous system and sense organs (SMR = 1630),
 mental disorders (other than dementia) (SMR = 1141) and
 bronchopneumonia (SMR = 647).

Excess deaths were also seen for diseases of the genitourinary system or digestive system,
cerebrovascular disease, other respiratory infections, dementia (in men only), other circulatory system
diseases (in women only) and accidental deaths (in women only) (Tyrer and McGrother, 2009).

Emerson et al noted that overall, the proportion of people with learning disabilities who die from cancer
in the UK is lower than the general population (12%-18% compared to 26%), although people with
learning disabilities have proportionally higher rates of gastrointestinal cancer (48%-59%, compared to 25%
of cancer deaths in the general population) (Emerson et al, 2012).

Details on further disease categories can be found in the reports by Weston et al (2012) and Emerson et
al (2012) on health inequalities relating to those with learning disabilities.

The Six Lives report outlined the cases of six people with learning disabilities who were thought to have
died unnecessarily as a result of problems with accessing healthcare (Health Service Ombudsman and
Local Government Ombudsman, 2009).

Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD, 2013, Heslop et
al 2014)

Following the Six Lives report, a confidential inquiry was set up. The Confidential Inquiry into premature
deaths of people with learning disabilities (CIPOLD) produced a report in 2013 (CIPOLD, 2013, Heslop et al
2014). The inquiry aimed to investigate the extent of premature death in people with learning disabilities
and to offer guidance on prevention. The findings confirmed that people with learning disabilities are
more likely to have a premature death than those in the general population. Researchers found that men
with learning disabilities died, on average, 13 years sooner than men in the general population. Women
with learning disabilities died, on average, 20 years sooner than women in the general population.
Overall, 22 per cent of the people with learning disabilities were under the age of 50 when they died,
compared with just nine per cent of people in the general population.

77
The inquiry found that the cause of premature deaths amongst people with learning disability is not, like
many in the general population, due to lifestyle-related illnesses. The cause of their premature deaths
appears to be because the NHS is not being provided equitably to everyone based on need. People with
learning disabilities were significantly more likely than the general population to die prematurely because
there had been delays or problems with investigating, diagnosing and treating their illnesses. They were
also more likely to have problems in having their needs identified and appropriate care being provided in
relation to their changing needs. Their families or carers had more problems in getting their views heard
and listened to.

The inquiry concluded that premature deaths amongst those with learning disabilities could be avoided
by improving the quality of the healthcare that they receive. The recommendations of the inquiry are
summarised at the end of this section.

Cheshire and Merseyside data

Recent data on individuals with learning disabilities who died in Cheshire and Merseyside was unavailable.
The LDSAF returns include information on the number of people with learning disabilities who have died
in the last year (2013-14). However as numbers under 5 are supressed the information is very limited (see
table 29). No data were available for Warrington or Wirral. Sefton and Liverpool saw the highest number
of deaths however without full unsuppressed data it is not possible to compare mortality rates.

A mortality audit of learning disability related deaths is currently being undertaken across South Cheshire
and Vale Royal CCGs following a number of recent cancer related deaths. The findings of the audit are
expected in the second quarter of 2016.

Table 29: number of people with learning disability who died in year to March 2014 by local authority.

Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens

East West &
Chester
Aged 0-13 0 0 0 0 0 0
Aged 14-17 0 0 0 <5 <5 0
Aged 18-34 <5 0 <5 <5 <5 <5
Aged 35-64 <5 5 <5 6 8 8 7
Aged 65 & over 5 <5 <5 <5 11 11 5

To stop identifying patients any numbers under 5 have been supressed and numbers 1-4 have been
replaced. Therefore columns cannot be totalled.

The Learning Disability Observatory (IHAL) Table 30: Median age at death for people with learning
examined mortality data for the period 2006 to disabilities, 2006-2010.
2010 and calculated the median age at death of Number of
Age at death
people with learning disabilities (i.e. the deaths
midpoint of the ages of all the people who have Knowsley 60.5 16
died). IHAL noted that data may be incomplete Liverpool 55.0 51
because often, doctors do not record learning Sefton 60.5 40
disabilities on death certificates if they consider Wirral 54.0 29
it had no relationship to the person’s death.
North West 55.0 610
Results for four of the local authorities in England 55.0 4,667
Merseyside and North Cheshire are shown in
Source: IHAL profiles. Data for Halton, St. Helens and
Warrington was unavailable.
78
Table 30. Values were only recorded where the number of deaths is greater than 10, which is probably
why data for Halton, St. Helens and Warrington was unavailable.

In Liverpool, the median age at death was the same as the national and North West figure of 55 and in
Wirral, it was just under, at 54. In Knowsley and Sefton, people with learning disability lived longer, with a
median age at death of 60.5 (although differences to the national figure were not significant).

Guidelines: avoidable deaths

Recommendations from CIPOLD

The key recommendations from the Confidential Inquiry into premature deaths of people with learning
disabilities (CIPOLD 2013) include:

• The need to identify people with learning disabilities in healthcare settings, and to record,
implement and audit the provision of ‘reasonable adjustments’2 to avoid their serious disadvantage.

• A named health professional to co-ordinate the care of those with multiple health conditions, aided
by the routine use of portable patient or carer-held health records and the continuing involvement of
specialist healthcare staff, who can work with the individual on a long-term basis.

• The identification of effective advocates to help people with learning disabilities access healthcare
services.

• Proactive planning for the future and anticipating needs, rather than responding in a crisis.

• Standardisation of Annual Health Checks and a clear pathway between Annual Health Checks and
Health Action Plans.

• Better adherence to the protection of the Mental Capacity Act. There is a need for greater
awareness of professional responsibility and further work at national and local levels to support
conformity to its requirements.

• Adults with learning disabilities to be considered a high-risk group for deaths from respiratory
problems.

• Guidelines for orders not to attempt cardiopulmonary resuscitation on a person to be revised and
clarified.

• The routine collection of data that provides information about the age and cause of death of people
with learning disabilities at national level.

• The establishment of a National Learning Disability Mortality Review Body to take forward the
reviews of deaths of people with learning disabilities.

In a response to the confidential inquiry, Mencap have launched a charter to eliminate health inequalities
in the NHS:
http://www.learningdisabilitytoday.co.uk/mencap_launches_charter_to_eliminate_health_inequalities_i
n_the_nhs.aspx

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In addition, prevention strategies should focus on those areas where deaths are potentially avoidable,
such as
 aspirational pneumonia
 seizures
(both relatively common and affect most groups of people with learning disability – Emerson et al, 2012)
 cardiovascular disease
 diseases of the genitourinary system and digestive system
 accidental deaths
(Tyrer and McGrother, 2009)

People with learning disability who are most at risk should be targeted, such as those with hypertension
or obesity (Tyrer and McGrother, 2009).

2
Reasonable adjustments: All public sector services now have a legal duty to provide reasonable
adjustments for people with learning disabilities in order to ensure equal access to services. These may
include additional support to make a service accessible, such as the provision of easy read information
(CIPOLD).

80
4: SOCIAL PROFILE

In his ‘ Fair Society, Healthy Lives’ review, Marmot recognises that health inequalities are the result of the
interaction between a range of different factors, including housing, poverty, employment, education,
social isolation and disability, all of which are strongly affected by economic and social status (Marmot,
2010). These social determinants of health can influence lifestyle factors (for example, poor diet) and are
related to other wellbeing factors such as stigma and bullying, all of which can have a negative impact on
health and wellbeing.

4.1 HOUSING

A recent Mencap Housing Report (Mencap, 2012) noted that the demand for services is set to rise steeply.
In 2011, there was a 3% increase in the number of people with a learning disability known to local
authorities who needed housing with support. A further 5.7% increase is expected over the next two
years. Mencap quoted research showing that to meet demand from the growing number of people with a
learning disability, there would have to be an additional 1,324 registered care home places and 941
supported living places created every year until 2026.

Mencap (2012) found that nearly 20% of people with a learning disability known to local authorities live
in accommodation that needs improvement. This includes one in three people living in registered care
homes and one in four people living with family and friends.

An important barrier to independence for people with learning disabilities is a lack of appropriate housing.
Mencap reported that almost two-thirds (61%) of local authorities believe that local housing
arrangements do not meet the needs of people with a learning disability. This has led to long waiting lists,
large numbers of people living far away from family and friends, and a high number of people living in
arrangements that do not promote independent living (Mencap, 2012).

Benefits reforms have introduced another barrier. Mencap note that changes to the benefits system
under the Welfare Reform Act 2012 change the way many housing options are funded, which will affect
the ability of local authorities to support independent living for people with a learning disability. With
only 6.6% of people with a learning disability in paid employment (see ‘employment’, Section 4.6), there
is widespread reliance on benefits to support living arrangements. Changes in the Act place a greater
focus on those with high-level needs, reducing the availability of benefits for those with low and
moderate needs (Mencap, 2012).

The majority of people with learning disabilities live in the family home, many with ageing parents. Some
people live in residential care, others in their own home with support coming in. Housing and support
needs can change as people age. The British Institute of Learning Disabilities (BILD) note that some
people want to ‘age in place,’ that is stay in their home with adaptations and physical changes to their
home depending on their needs. Others are happy to consider different housing options as their needs
change. There are a range of different housing options for older people and with the growing use of
technology people can be well supported to stay in their own home (BILD, 2013).

Assistive technology and telecare (AT&T)

The introduction of assistive technology and telecare (AT&T) into people’s lives should help to advance
the goals of increasing choice, independence/autonomy and inclusion for those with learning disabilities.
It has the potential to help people with learning disabilities to become more independent while keeping

81
them safe and reducing staff input. Devices such as finger-print operated door and room locks, tracking
systems and epilepsy and enuresis sensors have created the potential for vulnerable people to be
monitored remotely and supported as needs arise rather than having to be supported by staff directly
and irrespective of immediate need (Beyer et al, 2008).

Increased social isolation may be a potential consequence of AT&T in a certain situations. This needs to
be monitored and consideration given to compensatory strategies where necessary, such as fostering
relations with neighbours, or exploring more leisure activities with social contact in mind.

AT&T can also enhance the employability of people with learning disabilities, as demonstrated by the
TATE (Through Assistive Technology to Employment) project (see ‘Employment’, Section 4.6).

Types of accommodation

Local authority social service departments often become involved in helping people with learning
disabilities to arrange where they live. Types of accommodation can be divided into settled
accommodation, where the person can reasonably expect to stay as long as they want and unsettled
accommodation which is either unsatisfactory or, where, as in residential care homes, residents do not
have security of tenure (IHAL 2013). Examples of each of these are given in Table 31.

Severely unsatisfactory accommodation: Some non-settled accommodation could be seen as involving

serious emergency situations for people with learning disability. IHAL (2013) noted that these situations
are undesirable for anybody, but for people particularly likely to be vulnerable to abuse or exploitation,
or in need of particular support, they are especially serious. These severely unsatisfactory types of
accommodation are the non-settled categories marked * in Table 31.

Accommodation unknown: Looking at local authority figures for types of accommodation for working age
adults with learning disability, it is apparent that social services departments do not know about
everyone. The indicator ‘accommodation unknown’ shows the percentage of adults (aged 18 to 64) with
learning disabilities known to the local authority for whom no information about accommodation is
available (IHAL, 2013). This is calculated as the difference between ‘total service users’ and the sum of
the indicators ‘living in settled accommodation’ and ‘living in non-settled accommodation’ (as instructed
in IHAL 2013).

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Table 31: Categories of ‘settled’ and ‘non-settled’ accommodation lived in by people with learning
disability

Settled accommodation Non-settled accommodation

 Owner Occupier/Shared ownership  *Rough sleeper/Squatting

scheme
 Tenant - Local Authority/Arm’s Length
Management Organisation/Registered
Social Landlord/Housing Association
 Tenant - Private Landlord
 Settled mainstream housing with
family/friends (including flat-sharing)
 Supported accommodation/Supported
lodgings/Supported group
 Adult placement scheme
 Approved premises for offenders
released from prison or under probation
supervision
 Sheltered Housing/Extra care sheltered
housing/Other sheltered housing
 Mobile accommodation for Gypsy/Roma
and Traveller community
 *Night shelter/emergency hostel/direct
access hostel
 *Refuge
 *Placed in temporary accommodation by
Local Authority e.g., Bed and Breakfast
 Staying with family/friends as a short term
guest
 Acute/long stay healthcare residential
facility or hospital
 Registered Care Home
 Registered Nursing Home
 Prison/Young Offenders
Institution/Detention Centre
 Other temporary accommodation
*= severely unsatisfactory accommodation

Source: IHAL (2013)

CHESHIRE AND MERSEYSIDE

Table 32 shows the number of adults (aged 18 to 64) with learning disability, known to local authorities,
who the local authorities report are living in any one of these types of accommodation – either unsettled,
settled or accommodation unknown.

SETTLED

The majority of people with learning disabilities live in settled accommodation, either in their own home
or with family. According to the National Adult Social Care Intelligence Service (NASCIS), in 2013/14, there
were 4,530 male and 3,240 female adults with learning disability of working age in Cheshire and
Merseyside who were known to social services. Of these, 86% were recorded as living in their own homes
or with their family (i.e. in ‘settled accommodation’). This is higher than the national average of 76%, and
slightly lower than the North West average of 88% (NASCIS, 2015).

Table 32 shows the differences in the proportion of service users in settled and non-settled
accommodation across Cheshire and Merseyside. Proportions in settled accommodation are especially
high in Knowsley (93%). Warrington has the lowest proportion in settled accommodation (79%) although
Warrington did have a fairly high proportion of individuals whose accommodation status was unknown
this proportion is still above the national average.

83
Table 32: Accommodation status of people with learning disabilities (LD) aged 18-64, 2013/14
Non-settled Settled Accommodation
accommodation accommodation unknown**
number number Total
number of % of all with % of all % of all
of service of service
service users LD with LD with LD
users users
Halton 45 9.7 375 80.6 45 9.7 465
Knowsley 50 7.4 630 92.6 0 0.0 680
Liverpool 155 10.9 1265 88.8 5 0.4 1425
Sefton 135 16.8 670 83.2 0 0.0 805
St Helens 35 5.0 615 87.9 50 7.1 700
Wirral 160 14.4 950 85.6 0 0.0 1110
Liverpool City
580 11.2 4505 86.9 100 1.9 5185
Region
Cheshire East 115 11.4 860 85.6 30 3.0 1005

Cheshire West
110 10.4 910 85.8 40 3.8 1060
And Chester

Warrington 65 12.4 415 79.0 45 8.6 525

Cheshire 290 11.2 2185 84.4 115 4.4 2590
Cheshire and
870 11.2 6690 86.0 215 2.8 7775
Merseyside

North West 2070 10.3 17685 87.9 375 1.9 20130

England 30845 21.7 106335 74.9 4800 3.4 141980

Source: NHS IC, ASCCAR L2

**‘Accommodation unknown’ is calculated as calculated as the difference between ‘total service users’ and the sum of the indicators ‘living
in settled accommodation’ and ‘living in non-settled accommodation’ (as instructed in IHAL 2013)

Figure 17 provides a breakdown of adults with learning disabilities (of working age) living in settled
accommodation by accommodation type with percentages representing the proportion of working age
adults with learning disabilities known to services. The largest proportion were living in settled
mainstream housing with family or friends (including flat shares; 37%) followed by those living in
supported accommodation (28%).

84
Figure 17: Adults with LD living in settled accommodation by accommodation type, Cheshire and
Merseyside, 2013/14

100%

90% 86.0%

80%

70%

60%

50%

40% 37.2%

28.4%
30%

20%
10.9%
10% 4.2% 3.3% 1.5% 0.1% 0.5%
0%
Owner Tenant - non- Tenant - private Settled Supported Adult Approved Sheltered Total
Occupier private* landlord mainstream accomodation placement premises for housing
shared housing with scheme offenders
ownership family/friends
scheme

Source: NHS IC, ASCCAR L2

* Tenant non-private includes tenants of Local Authority, Arms-length management organisations, registered social landlords and housing
associations

Data from the Adult Social Care Outcomes Framework suggests that the number of adults with learning
disabilities who live in their own home or with their family has increased slightly over the past five years
rising from 70% in 2011/12 to 73% in 2014/15. In the North West the proportion is substantially higher at
88% in 2014/15. Figure 15 below shows the proportion of adults living in their own home or with family
by local authority. All local authorities in Cheshire and Merseyside are above the national average.

85
Figure 15: Proportion of adults with learning disabilities who live in their own home or with their family,
Cheshire and Merseyside, 2014/15

100
England average
90
80
70
60
50
40
30
20
10
85.1 88.7 89 82.3 93.9 83.1 85.3 88.7 86.5 87.9
0
Halton Knowsley Liverpool Sefton St Helens Wirral Cheshire Cheshire Warrington North West
East West And Total
Chester

Source: HSCIC, ASCOF data

NON-SETTLED

Nationally, just over one in five (21.7%) adults with learning disabilities age 18-64 live in non-settled
accommodation. In Cheshire and Merseyside, the situation is much more favourable, but there are still
six local authorities where the level is above the North West average of around 1 in 10 (10.3%). Levels are
highest in Sefton (16.8%), Wirral (14.4%) and Warrington (12.4%) (see Table 22).

The largest proportion of individuals classified as living in “unsettled accommodation” in Cheshire in

Merseyside were residing in a registered care home (76%) followed by a registered nursing home (14%),
an Acute/long stay healthcare residential facility or hospital (3.4%) and staying with family and friends as
a short term guest (2.3%).

Living in permanent residential and nursing care homes

The NHS IC term ‘unsettled accommodation’ includes those living in residential care homes. The largest
proportion of individuals living in ‘unsettled accommodation’ in 2013/14 were residing in a registered
care home (76%) with a further 14% residing in a registered nursing home. In Knowsley 100% of those in
unsettled accommodation were living in nursing or care homes7 whilst in St Helens the proportion was
much lower (43%) with higher numbers of St Helens residents living in either a “acute/long stay
healthcare residential facility or hospital’ (29%) or staying with friends and family as a short term guest
(14%).

7
In Liverpool the sum of those living in registered care homes and registered nursing homes (n=160) was greater than the total number
reported to be in unsettled accommodation (n=155).

86
Adult Social Care Outcomes Framework data for 2014/15 includes permanent admissions to residential
and nursing care of younger adults with learning disability. Table 33 gives the rate of admission per
100,000 of the general population for each local authority in Cheshire and Merseyside. Rates are lower
than the national and regional average in each local authority except Wirral.

Actual numbers of permanent admissions are very small with Cheshire West and Chester and Wirral
seeing the highest number of admissions (10 per local authority).

Table 33: Permanent admissions of younger adults (aged 18 to 64) with learning disabilities (LD) to
residential and nursing care homes, per 100,000 population (adjusted), 20013/14
Permanent admissions of Total population Rate per 100,000
young adults with LD to aged 16-84 general population
residential nursing homes aged 16-84
Cheshire East * 219740 *
Cheshire West and Chester 10 199025 5
Halton * 77510 *
Knowsley * 89665 *
Liverpool 5 313100 1.9
Sefton * 159455 *
St Helens * 105980 *
Warrington * 125745 *
Wirral 10 188205 6.4
North West 155 4341150 3.6
England 1665 33054185 5

Source: NHS Information Centre, Adult Social Care Outcomes Framework for 2013/14. *= numbers too small to include

SEVERELY UNSATISFACTORY

IHAL (2013) report that numbers for this indicator are low and in most cases where the figure is not zero
the exact number is not known (because rounding is introduced into the statistics for confidentiality
reasons). They add that in any case, it is likely that numbers reported are out of date by the time tables
are published.

In Cheshire and Merseyside, there were no adults recorded to be in severely unsatisfactory

accommodation in 2013/14 (see table 21 above for a full definition).

UNKNOWN

Table 32 shows that some of the variation in levels of settled and unsettled accommodation can be
explained by the fact that in some areas the accommodation status of a sizeable minority of adults with
learning disability is unknown to the local authority (as mentioned in the text preceding Table 32 above).

In Halton, the accommodation status of just under one in ten (9.7%) of adults with learning disability was
unknown in 2013/14. Levels were also higher than the national average of 3.4% in Warrington, St Helens,
Cheshire West and Chester.

87
Gender

Overall, there was not a great deal of difference between the sexes in accommodation status across
Cheshire and Merseyside and nationally. However, there were differences worth highlighting in two local
authorities:
 In Sefton, women (24%) were twice as likely as men (12%) to be in unsettled accommodation
 Conversely, in St Helens men (7%) were over twice as likely as women (3%) to be in unsettled
accommodation

GUIDELINES: HOUSING

Social determinants of health: The CCG Commissioning Guide noted that CCGs will need to work with
Local Authorities and public health to tackle the social determinants of poorer health, such as
housing, discrimination, unemployment and social exclusion (IHAL, 2012). Commissioning
responsibility for these issues sits with Local Authorities.

The Mencap (2012) housing report called for the development of a national strategy on housing for
people with a learning disability. This will pull together learning across local authorities and identify
what action needs to be taken at the national level.

Mencap also recommend that all local authorities include specific plans for improving the housing
situation of people with a learning disability in local housing strategies. As local authorities will face
growing pressures from increasing local need, planning for the future is crucial. An action plan
designed around promoting independent living should accompany any such plans.

Assistive technology: Care managers and commissioners of packages of support will increasingly
require assistive technology and telecare (AT&T) to be part of the services provided by support
organisations. They need to consider what AT&T can do as part of a package of support (Beyer et al,
2008). Beyer et al set out steps for assessing the AT&T needs of people with learning disabilities.
Arrangements need to be made for increasing awareness of AT&T and its use among staff, person
centred planners, service users and commissioners.

EXAMPLES OF LOCAL DELIVERY: Housing

Wirral: Lee Court

Lee Court is a scheme in Hoylake for young disabled people, some with learning disabilities and others
with physical disabilities, who all wanted to live together, but independently from parents. The issue
of young disabled people still living ‘at home’ with increasingly elderly parents was one that needed to
be addressed. Wirral Council and the RSL (Wirral Methodist Housing Association) made a successful
bid to the Government’s Homes and Communities Agency for £529,000, and the scheme cost £3.2
million in total. 11 flats for clients with learning difficulties were built, as well as two bungalows in
small group settings for the disabled, and eight two bedroom flats for the active elderly. Wirral
Department of Adult Social Services provide a care and support package to assist the residents in
maintaining their tenancies, with 24 hour coverage and targeted interventions contracted out to
Wirral Independent Living and Learning.

Contact: Sarah Kinsella [sarahkinsella@wirral.gov.uk]

88
 ‘My Housing Plan’, Wirral.
Wirral has a specific Learning Disability Housing Plan, which has been developed as an action from the
Learning Disability Housing Strategy and is available in EasyRead for LD clients. In turn, this has led to
the development of a ‘My Housing Plan’ document which has been designed to capture needs and
aspirations, provide an evidence base of future housing needs for clients with a learning disability,
show current and future housing needs, and inform future commissioning for housing and services.

The aim is to enable people with learning disabilities to have the same choice and options about where
they live as the rest of the population. The My Housing Plan will be completed at a client’s review with
all clients (even if they have no wish to currently move).

Partnership working between local housing authorities, social services, health and other local agencies
will be required in order to accomplish the plan.

Contact: Sarah Kinsella [sarahkinsella@wirral.gov.uk]

London: Settled accommodation

In London, a number of boroughs took part in an initiative to increase the number of people with
learning disabilities in settled accommodation. This included:

 person-centred reviewing to support adults with a learning disability to achieve their

aspirations;
 engagement and negotiation with providers to reduce costs;

The initiative delivered:

 significant efficiency savings in expenditure on learning disability services;

 quality outcomes for adults with learning disabilities;
 improvements in the balance between supported living and residential care;
 an increase in the number of adults living in settled accommodation.

IHAL, 2012. Further information: www.evidence.nhs.uk/qipp

Extra Care Housing Scheme

A mother in her 80s and daughter with Down syndrome in her 50s had been separated for the first time
in their lives through illness; the mother was temporarily in a care home. They were able to move into a
one bedroom flat together in an extra care housing scheme: in their previous housing they had always
shared the same bedroom. Within a year the mother died, but the daughter was able to remain in the
flat. She received sensitive and appropriate support from staff and other tenants who already knew her,
she continues to thrive.

Housing Learning and Improvement Network (2006), quoted on BILD website (BILD is the British Institute
of Learning Disabilities)

http://www.bild.org.uk/information/ageingwell/housing/

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 ‘What Lies Ahead’ Project

Whitfield Lodge, Family led housing scheme, St. Helens

Whitfield Lodge in the Clock Face area of St Helens is a ‘Your Housing Group’ supported living
environment for 10 people with learning disabilities. The Care Provider is Creative Support. It was
commissioned by a group of parents who were looking for long term solutions for their sons and
daughters as they aged. The group wanted to have more involvement in the planning process of care,
rather than wait until a crisis occurred.

Over many months the parents, on behalf of their families, worked closely with St Helens Council and
Arena Housing Association and in 2002 a plot of land had been negotiated and design options for the
housing scheme had been finalised. The new accommodation was to consist of 10 individually
designed apartments all under one roof (similar to a sheltered housing complex). The concept behind
the scheme was that the adult tenants should be able to live as independently as possible within the
confines of their individual disabilities. During the build the families worked with an independent
Brokerage Organisation and Social Services to finalise the care packages for each person.

The Housing Association decided to procure the project using the PPC 2000 Partnering Form of
contract, which meant that all partners could participate in the briefing process right the way through
the project from inception to completion.

Work on the site began in February 2003 and handover of the project took place in November the
same year. During this time the Housing Association also arranged monthly meetings with the parents
so that everyone was kept up to date on progress which proved invaluable when it came to tendering
for the Care provider and the eventual transitional process of their sons’ and daughters’ into their new
homes. Arena Housing Group have now merged with Harvest Housing Group to form Your Housing
Group

St. Helens council was breaking new ground by working with a group of parents on this project, with
the Assistant Director of Social Services telling the carers and clients that they would be in the driving
seat from the outset, which they felt they have been. They hope it has paved an easier path for those
families who will follow on when their time comes.

Contacts:
Carolann Bowers, Carers Support Group, St.Helens carolann1945@live.co.uk

Colin.Croxton@yourhousinggroup.co.uk Agency Services Manager

www.yourhousinggroup.co.uk

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4.2 COMMUNITY CARE

Table 34 below shows the extent to which local authorities are providing community services for people
with learning disabilities known to them. Community based services are services commissioned and
provided by social services or and NHS Health Partner as part of a care plan following a Community Care
Assessment and include home care, day care, meals, direct payments, short term residential care
(excluding respite), professional support and equipment and adaptions. Nationally, just over eight in ten
(82%) of those aged 18-64 years with learning disability were receiving community services in 2013/14.
Across Cheshire and Merseyside, rates were higher than the national average with the exception of
Sefton and St Helens where around three quarters (73% and 76% respectively) received community
services.

Table 34: Community Based Services received by those with learning disabilities, aged 18 to 64,
2013/14
Numbers receiving Total population with a % of all learning
learning disability learning disability disability clients
community services known to the local receiving
authority aged 18-64 community services

Halton 395 465 85%

Knowsley 640 680 94%
Liverpool 1405 1425 99%
Sefton 590 805 73%
St Helens 530 700 76%
Wirral 955 1110 86%
Liverpool City Region 4515 5185 87%
Cheshire East 945 1005 94%
Cheshire West And Chester 850 1060 80%
Warrington 430 525 82%
Cheshire 2225 2590 86%
Cheshire and Merseyside 6740 7775 87%
North West Total 18080 20130 90%
National Total 117025 141980 82%

Source: NHS IC NASCIS, RAP P1

4.3 VIOLENCE/ KEEPING SAFE/ SOCIAL ISOLATION

A vulnerable adult is someone who is aged over 18, but may not have the ability to not only look after
themselves, but may also be at risk because they can’t protect themselves from harm or exploitation
(About Learning Disabilities, online B). People with learning disabilities may be classed as vulnerable.
They may be at risk in their own homes, in their local communities or whilst using public transport. They
are at increased risk of becoming victims of sexual abuse, bullying, and are less able to defend themselves
against violence.

Factors which place people with disabilities at higher risk of violence include stigma, discrimination, and
ignorance about disability, as well as a lack of social support for those who care for them. Placement of
people with disabilities in institutions also increases their vulnerability to violence (WHO, online).

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Violence

A review on the prevalence and risk of violence against children with disabilities found that overall,
children with disabilities are almost four times more likely to experience violence than non-disabled
children. Children with mental or intellectual impairments appear to be among the most vulnerable, with
4.6 times the risk of sexual violence than their non-disabled peers (Jones et al, 2012). A separate review
on adults found that those with ‘intellectual impairments’ were 1.6 times more likely to be a victim of
violence than those without a disability (Hughes et al, 2012).

It has been recognised that the sex education needs of young people with learning disabilities are not
being met (Simpson et al, 2010) (see Section 3.4). The importance of addressing these needs was
highlighted by an NSPCC study which revealed a higher level of sexual abuse and exploitation among
children and young people with learning disabilities (NSPCC, 2006).

Hate Crime

In 2010/11 the Equality and Human Rights Commission launched an inquiry (“Hidden in Plain Sight”) into
disability related harassment to investigate both the causes of disability related harassment and the
actions of public authorities and transport operators in preventing it. Following on from the enquiry the
Commission published “Out in the Open – A Manifesto for change” (EHRC, 2012) in which it made a
commitment to encourage, guide and monitor the progress of local authorities and publish reviews into
the impact of the enquiry at years one, three and five.

Baseline analysis from the Commission suggests that in England and Wales there are around 72,000
incidents of disability hate crime per year and 39,000 adults annually are the victims of disability hate
crime. The incidence of personal disability hate crime was 8 per 10,000 adults and the household
incidence was 15 per 10,000 households (EHRC, 2013). In addition, disabled people of all ages were more
likely than non-disabled people to have experienced any type of crime in the past 12 months e.g. 42% of
disabled people aged 16-24 had been victims in the past 12 months compared with 33% of non-disabled
people. This difference was particularly marked in women whilst the differences between disabled and
non-disabled men were not significant and disabled women were as likely as men to be the victim of
crime whilst in the general population men are more likely to be the victim of crime than women.

Not all hate crimes will come to the attention of the police as not all victims will report them. Police were
more likely to be informed of disability hate crime incidents (56% for personal crimes, 55% for household
crimes) compared with crimes not motivated by identity (38%); however, there was no significant
difference in the reporting of disability related hate crime when compared to other types of hate crime.
The most common reasons for not reporting disability hate crime were the belief that the police could
not have done anything (36%); that the police would not have been interested (31%) or that they were
too trivial to report (17%). Victims of disability related hate crime were less likely when compared to
victims of other hate crimes to say the incident was too trivial to report (17% vs 29%) but were more
likely to say they were fearful of reprisal from the offender (11% vs 2%) (EHRC, 2013).

Bullying

At the age of seven, significantly more children with learning disabilities report being bullied more than
once or twice at school (14%) when compared to those with no learning disability (6%) (Emerson et al,
2012, analysis of the Millennium cohort study, which tracks children born between 2000 and 2002).

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Further analysis of the Millennium cohort study shows that a child aged 5 to 17 years with SEN (12%) and
a child with a statement (11%) are twice as likely to be bullied “all the time” than a child with no SEN (6%)
even when all other characteristics and circumstances are controlled for (Chatzitheochari et al, 2014;
Chatzitheochari et al, 2015).

In a recent survey of people with autism, 63% of young people reported having been bullied at school,
rising to 75% in secondary school and as many as 82% of those with high functioning autism or Asperger’s
syndrome (Bancroft et al, 2013).

Social isolation

Isolation can make people more vulnerable. The report of the first national survey of adults with learning
disabilities in England (Emerson et al, 2005) found evidence of social exclusion and stigma amongst the
2,898 participants:

 58% of adults with learning disabilities had infrequent contact with their families (compared to 9%
of those with no learning disability)

 31% of adults with learning disabilities had no contact with friends (compared to 3% of adults
without learning disability)

 Nearly one in three people (32%) said someone had been rude or offensive to them in the last
year because they have learning difficulties

The survey found that barriers to social contact for those with learning disability included living too far
away; no time; no money; unable to get out; or afraid of going out (Emerson 2005).

In the 2012 survey of people with autism, 22% of young people said they had no friends at all and half
said they would like more friends (Bancroft et al, 2013). Amongst adults, 1 in 4 (24%) said they had no
friends, with 66% saying that their main friend was a family member or their carer and 65% saying they
would like more friends. For those adults with autism who also had a learning disability, the proportion
who said they had no friends was higher, at one-third.

The survey found that the support that people with autism most want is to help them to socialise and
become less isolated.

Cheshire and Merseyside

Table 35a shows local statistics relating to the abuse of vulnerable adults with learning disabilities across
Cheshire and Merseyside in 2012/13. Abuse refers to “a violation of an individual’s human and civil rights
by any other person or persons” and can include physical, sexual, emotional and psychological, financial,
institutional, abuse as well as neglect and discrimination. It lists numbers and rates per 10,000 of referrals
of adults with learning disabilities to the social service safeguarding teams. Across Cheshire and
Merseyside there were 1,320 completed referrals of abuse of adults with learning disabilities during
2012/13. Further detail on the nature of the alleged abuse is provided in table 25b.

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Table 35a: Abuse of Vulnerable Adults: Number of completed referrals to Social Care Adult
Safeguarding Teams by age of alleged victim with learning disabilities, 2012/13

Total
aged
Aged 18 to 64 Age 65 to 74 Age 75-84 Age 85 and over 18+

Numbe
r of Rate Number Rate Number
comple per Rate per Rate per of per of
ted 10,000 Number of 10,000 Number of 10,000 complet 10,000 complete
referral popula completed populatio completed populatio ed popula d
s tion referrals n referrals n referrals tion referrals
Halton 45 5 0 0 0 0 0 0 45

Knowsley 75 10 5 0 0 0 0 0 80

Liverpool 250 10 25 5 5 0 0 0 280

Sefton 140 10 15 5 5 0 0 0 160

St Helens 110 10 0 0 0 0 0 0 110

Wirral 170 10 10 5 0 0 0 0 180

Liverpool 790 55 10 0 855

city region
Cheshire 275 10 15 5 10 5 0 0 300
East
Cheshire 60 5 0 0 0 0 0 0 60
West And
Chester
Warrington 100 10 5 5 0 0 0 0 105

Cheshire 435 20 10 0 465

Cheshire 1225 75 20 0 1320

and
Merseyside
North West 2355 5 170 5 60 0 5 0 2590
Total
Total 15305 5 1020 0 260 0 80 0 16665

Source: AVA, NASCIS 2013/14

Amongst those aged 18-64, referral rates were higher than the North West and national average of 5 per
10,000 in seven of the nine local authorities in Cheshire and Merseyside. Cheshire East (275) and
Liverpool (250) recorded the highest number of completed referrals. Rates in Halton and Cheshire West
and Chester were the same as the North West and national average (5 per 10,000 population).

For those aged 65-74, none of the local authorities in Cheshire and Merseyside had a higher rate of
referrals than the North West average of 5 per 10,000. Across Cheshire and Merseyside there were no
referrals for those aged 85 years and over. For those aged 75 plus, numbers were too small to calculate
meaningful rates; only three local authorities had referrals in adults aged 75 years and over; Liverpool (5),
Sefton (5) and Cheshire East (10). Overall numbers of referrals amongst those aged 65+ were very small;

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with 95 referrals in total across Cheshire and Merseyside; representing 7% of the total completed
referrals.

There rate of completed referrals did not vary greatly between the sexes in numbers of vulnerable adults
with learning disability who were referred to social services in 2012/13.

Table 35b: Abuse of Vulnerable Adults: Number of completed referrals to Social Care Adult
Safeguarding Teams by nature of alleged abuse for adults with learning disabilities (aged 18-64 years),
2012/13
Emotion
al/ Discrimi
Physical Sexual Financial Neglect Institutional Multiple Total
psychol natory
ogical
Cheshire
East 155 25 80 45 60 5 5 60 375
Cheshire
West And
Chester 25 5 10 15 15 0 0 10 75
Halton 10 5 15 15 15 0 5 5 65
Knowsley 45 10 25 15 10 0 0 0 105
Liverpool 120 25 35 45 75 0 0 0 295
Sefton 45 10 40 30 40 5 5 40 175
St Helens 55 10 25 15 10 0 0 10 115
Warrington 55 15 20 10 25 0 0 35 130
Wirral 65 15 40 30 30 0 5 0 180
Cheshire and
Merseyside 575 120 290 220 280 10 20 160 1515
North West
Total 1185 270 560 400 620 30 95 450 3155

Source: AVA 4b, NASCIS, 2012/13

Table 35b shows the nature of alleged abuse for referrals across Cheshire and Merseyside for adults
(aged 18-64 years) with learning disabilities. The numbers presented in table 35b are higher than those in
table 35a as they refer to all referrals made to Social Care Adult safeguarding Teams whilst table 35a uses
data on completed referrals only. The largest proportion of referrals were for physical abuse (38%) with
the highest absolute number of referrals for physical abuse made in Cheshire East (155 referrals)
followed by Liverpool (120 referrals). The next highest proportion of referrals were made for emotional
and psychological abuse (19%) followed by neglect (18%) and financial abuse (15%). Just over one in ten
(11%) of unique referrals made were for multiple types of abuse.

Across Cheshire and Merseyside in 2012/13, a third of referrals among adults with learning disabilities
(aged 18-64; 33%, 785) were substantiated and 12.5% partially substantiated (295 referrals). A further 29%
were not substantiated and 25% were not determined or non-conclusive. Of completed referrals, 48%
(610 referrals) among adults (aged 18-64) with learning disability were offered a Protection Plan. No
further action was taken on 440 (35%) of referrals. None of the referrals led to a serious case review.

Hate crime: Hate Crime is any offence or incident committed against individuals, groups and communities
because of who they are. It is an act motivated by someone's prejudice towards another person because
of his or her age, disability, gender identity, race, religion or belief or sexuality (Safer St. Helens online).
Hate crime was one of the main issues identified by people with learning disabilities in a consultation

95
exercise in Sefton for the previous needs assessment (Ubido et al, 2013). In future, it may be possible to
obtain figures on disability hate crime from Merseyside Police’s SIGMA unit. SIGMA is a dedicated Hate
Crime Investigation Unit, (the name is taken from a character in the Greek alphabet).

GUIDELINES: VULNERABLE PEOPLE AND ISOLATION, STIGMA AND VIOLENCE

The government has published a booklet for vulnerable people and their carers entitled ‘Keep Safe’. It
advises ways in which vulnerable people, including learning disabled, can help to reinforce their
personal safety, whether in their homes, entering into their local communities or travelling around
(About Learning disabilities, online B).

The National Autistic Society runs social groups, where people with autism can get together and
socialise with their peers. 82% of those attending Scottish social groups said that they had learnt new
skills as a result of attending, with 72% saying that thanks to attending the group they now had
sufficient confidence to socialise outside of it (Bancroft et al, 2013).

Guidance produced by the Child and Maternal Health Intelligence Network (CHIMAT) provides advice
on dealing with bullying involving children with special educational needs (SEN) and disabilities
(CHIMAT, 2008).

Social determinants of health: The CCG Commissioning Guide notes that CCGs will need to work with
Local Authorities and public health to tackle the social determinants of poorer health, such as
housing, discrimination, unemployment and social exclusion (IHAL, 2012). Commissioning
responsibility for these issues sits with Local Authorities.

4.4 PEOPLE WITH LEARNING DISABILITIES IN THE CRIMINAL JUSTICE SYSTEM

The Bradley Report (DH Bradley Report, 2009) highlighted the disproportionately high number of people
with learning disabilities and mental health problems in the criminal justice system (CJS - a term used to
mean the police, courts, prison and probation). It has been estimated that the proportion of people in
prison who have learning disabilities or learning difficulties that interfere with their ability to cope with
the criminal justice system is around 20-30% (Loucks, 2007, Talbot, 2008).

Young people with learning disabilities also apprear over-represented in the youth justice system (YJS),
which is the system for dealing with offending by those aged 10-18. It is estimated that 25 to 30 per cent
of children and young people in the YJS (i.e. not necessarily in custody) have learning disabilities, and that
around 50 per cent of those in custody have learning difficulties (HM Government, 2009). (see Section 1.2
for a discussion of the distinctions between the term ‘learning disability’ and ‘learning difficulty’). A
report carried out on behalf of the Youth Justice Board (Harrington and Bailey, 2005; Gayenteng et al,
2013) found that almost a quarter of young offenders had learning difficulties (IQ<70), while a further
third had borderline learning difficulties, with an IQ of between 70 and 80.

However, the true numbers of adults and young people entering the criminal justice system remains
unknown. The Prison Reform Trust (2012a) found that information accompanying people into prison is
unlikely to show that the presence of learning disabilities or difficulties had been identified prior to their
arrival and a recent inspection by the Criminal Justice Joint Inspection Group (2015) found that there is
often an over reliance on offenders and their families to disclose a learning disability diagnosis. Recent

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recommendations made by NHS England (2015), the Criminal Justice Joint Inspection Group (2015) and
the Royal College of Psychiatrists (2014) highlight the importance of screening individuals for learning
disabilities upon entering the CJS. The most recent Criminal Justice Joint Inspection report found that
screening tools were not routinely used at the pre-sentence or induction stage and only one of the
prisons visited during the inspection were routinely screening for learning disabilities during the
reception process. A recent study used the LDSQ to screen 3,000 prisoners entering three English prisons
and found that just under 7% of those screened were positive on the LDSQ (Murphy et al, 2015) with all
the prisons making some reasonable adjustments to their procedures as a result. This study confirms the
feasibility of introducing routine screening in the prison setting.

This failure to appropriately identify individuals with learning disabilities entering the CJS means that
often these individuals are not receiving
specialist provision or accessing the Box 2
healthcare they need once in prison (NHS Inequalities in access to
England, 2015; Prison Reform Trust, 2015). offending behaviour programmes
The most recent inspection by the Criminal
Justice Joint Inspection Group (2015) stated In February 2010 a prisoner with learning disabilities,
who had served over twice his tariff, was awarded a
“little thought was given to the need to
case for breach of the Disability Discrimination Act
adapt regimes to meet the needs of and for breach by the Secretary of State for Justice
prisoners with learning disabilities who may for failing in his duties to take steps to enable the
find understanding and following prison prisoner in question to undertake some type of
routines very difficult”. Adults with learning offending behaviour work.
disabilities in the CJS have a number of
The Prison Reform Trust, 2012b
vulnerabilities including not understanding
the processes or their rights, being
acquiescent during interview and making
unwise decisions and crucial points (Murphy, 2014). The Bromley Briefings (Prison Reform Trust, 2012b)
provided evidence that people with learning disabilities may serve longer custodial sentences than others
convicted of comparable crimes (see Box 2). Many miss out on interventions they needed to secure their
release. Offending behaviour programmes are not generally accessible for offenders with an IQ below 80.

In addition, prisoners with learning disabilities are known to be disadvantaged in prisons and more
susceptible to bullying, segregation, depression and anxiety (Murphy et al, 2015). Research by Talbot
found that over half of prison staff believe that prisoners with learning disabilities or difficulties are more
likely to be victimised and bullied than other prisoners. Over half of such prisoners say they had been
scared while in prison and almost half say they had been bullied or that people had been nasty to them
(Talbot, 2008). Four-fifths of prisoners with learning disabilities having problems reading prison
information. This means that they often miss out on things such as family visits and going to the gym, or
getting the wrong things delivered such as canteen goods. Prisoners with learning disabilities or
difficulties are the most likely to spend time on their own and have fewer things to do. They are also five
times as likely as prisoners without such impairments to have been subject to control and restraint
techniques and more than three times as likely to have spent time in segregation (Prison Reform Trust,
2012b).

There are large numbers of people with learning disabilities being dealt with by the criminal courts on a
daily basis, with the actual numbers unknown (Prison Reform Trust, 2012a). The Prison Reform Trust (PRT)
called for reasonable adjustments to be made, so that the ordinary trial process is adapted so far as is
necessary to assist vulnerable defendants to understand and to participate in proceedings. They noted
that at present, vulnerable defendants don’t have the same statutory protection to support, in law, as

97
vulnerable witnesses do. However, under the Disability and Equality Act (2010), ‘reasonable adjustments’
should be made to ensure that discrimination against people with disabilities does not occur. The
government has committed to liaison and diversion services in every police custody suite and criminal
court by 2014 (NLDDN, online). As pointed out by the PRT, these will only work if local learning disability
service providers work collaboratively to ensure the most appropriate outcome for the individual
concerned. Learning disability services need to work with criminal justice staff to identify when people
might have a learning disability and to ensure that the necessary support is put in place (Prison Reform
Trust, 2012a).

Adults with Autism Spectrum Disorder (ASD).

Many of the guidance documents considered below, including the most recent guidance produced by
NHS England (2015) acknowledge that a disproportionately high number of prisoners have ASD however
there is currently no national data to give the exact figures. In a recent systematic review King and
Murphy (2014) acknowledge that it is not uncommon for people with ASD to show challenging
behaviours which can become chronic thus requiring specialist interventions and putting the individual at
risk of entering the criminal justice system. Four factors are suggested which may make people with ASD
more likely to carry out criminal acts, namely: an increased social naivety which puts them at risk of
manipulation by others; disruption of routine or over rigid adherence to rules may lead to aggression;
poor negotiating skills and lack of understanding in social situations may lead to aggression and,
obsessional interest and failure to recognise the implications of their behaviour may lead to committing
and offence through pursuit of that interest.

Studies suggest that the prevalence of ASD in CJS is higher than the prevalence of ASD in the general
population however this conclusion is modified by the poor methodologies and biased samples used in
the studies which formed part of Murphy and King’s review (2014). Similarly the prevalence of offending
in ASD populations are also difficult to interpret but suggest that adults with ASD commit the same or
fewer offences than those in non-ASD populations. This suggests that people with ASD are less likely to
commit a criminal offence than other people of the same age and gender or that if they do show
offending type behaviour this is dealt with outside the CJS. It is also difficult to draw conclusions from the
available evidence about the types of offences committed by those with ASD however one study
interestingly found that those with ASD are less likely to commit probation violations whilst another
study found that people with ASD are more likely to commit crimes involving school disturbances perhaps
reflecting the difficulties experience by some adults living with ASD when coping in the school
environment (Murphy and King, 2014)

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Guidelines: ASD and the Criminal Justice System

Austim: a guide for Criminal Justice Professionals (2011): the National Autistic Society provides
guidance for those working in the criminal justice system. The key focus of the document is to provide
guidance for professionals on: recognising and approaching people with autism in the CJS and
communicating with people with autism; this includes specific guidance on questioning and
interviewing people with autism in the CJS.

Autism Accreditation Programme: The National Autistic Society has developed a set of standards for
prisons which allow the prison to claim internationally recognised “autism accreditation”. The
accreditation involves a self-audit process followed by a formal review against set criteria which
evidence that the organisation has:

 Specialised knowledge and understanding of autism

 Knowledge and understanding that autism consistently informs the organisation, resources
and management of the organisation
 Knowledge and understanding or autism consistently informs the assessment and support
plan for people who use the service
 Knowledge and understanding of autism consistently informs all aspects of practice

Cheshire and Merseyside

For those aged under 18, Hindley is where the majority of male young offenders from the Merseyside
area are sent to if they are sentenced to custody. There are no YOI institutions in Merseyside. Female
offenders are sent elsewhere in the country, and are likely to be held further from home. There is one
secure children’s home for offenders in St Helens (Red Bank). There are no secure training centres.

For over 18s – there are no female prisons on Merseyside. There are 3 male prisons on Merseyside –
HMP Liverpool, Altcourse, and HMP Kennet. In Cheshire there are two male prisons HMP Thorn Cross and
HMP Risley. Female offenders from the Cheshire and Merseyside area are sent to HMP Styal in Cheshire.

The Alderley Unit in Cheshire is a low secure service unit for males with 15 beds for those with mild to
moderate learning disabilities who have or are assessed likely to commit an offence.

As with other agencies, young people with learning disabilities are considered to be young people until
the age of 25 years. Most youth offending teams will assess young people at 18, and make a decision as
to their suitability for transfer and ability to cope with the adult system (Lewis and Scott-Samuel, 2013).

Local data: The Adult Social Care Combined Activity Returns (ASCCAR) from the NHS Information Centre
include information on accommodation type for those people with learning disability who are known to
local authorities. This includes:

 numbers in custody (prison/young offenders institution/detention centres), and also

 numbers in approved premises for offenders released from prison or under probation
supervision (e.g., probation hostel)

Across both Cheshire and Merseyside and the North West as a whole there were no individuals known to
have learning disability recorded as being in custody. There were ten individuals known to have a learning

99
disability residing in approved premises in the community in 2013/14 all of whom resided in Wirral. This
illustrates the under-reporting of learning disability for people in the criminal justice system and the need
for improved screening at the point of first contact.

A health needs assessment for young offenders across the youth justice system on Merseyside (Lewis and
Scott-Samuel, 2013) found that at HMYOI Hindley, in a 4 month period (1st August to 30th November
2011), there were 56 referrals to the learning disability service. It is not known what proportion of these
referrals were of people from the Merseyside area. At the time of the needs assessment, there were two
full-time learning disability nurses employed at Hindley.

There was found to be no direct provision for young offenders with learning disabilities at Red Bank
home in St. Helens.

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GUIDELINES: CRIMINAL JUSTICE SYSTEM

‘Commissioning Specialist Adult Learning Disability Health Services’ (DH, 2007) details good practice guidance,
including recommendations relating to offenders with learning disabilities. In particular, it was recommended that
health screening should be carried out to identify those in prison who have learning disabilities and the health
needs they may have and to provide links to community learning disability teams.

Lord Bradley was asked to look at diverting people with mental health problems and learning disabilities away from
the CJS. The main findings of the report included interventions to help vulnerable people as soon as possible in the
criminal justice system. It also called for a separate review, looking at prevention and intervention for options for
children and young people who are at risk of offending. In terms of prison health care, the report calls for
appropriate community alternatives for vulnerable offenders, saving up to 2,000 prison places per year. The report
reiterated the need for better screening for learning disabilities and mental health problems when people arrive at
prison. It also called for greater continuity of care when people enter and leave prison (DH Bradley Report, 2009).

The recommendation for offender health screening programmes to identify learning disability also featured in the
interim report published in response to Winterbourne View (DH, 2012a). This report also recommended that social
care services should work closely with prison and secure services to ensure person centred planning and health
action planning and to plan for appropriate provision when people move on from prison or secure services.

‘Positive Practice, Positive Outcomes 2011’ (DH, 2011a), has been written for staff working in the Criminal Justice
System. It gives staff information about learning disabilities and learning difficulties, outlines the laws that protect
people with learning disabilities and learning difficulties in the Criminal Justice System, and gives examples of good
practice from around the country. The Government have also produced an Easy Read booklet for people with a
learning disability who find themselves in contact with the Criminal Justice System.

The NCB are now responsible for the commissioning of all health services for people in prisons and other custodial
settings (adult prisons, young offender institutions, juvenile prisons, secure children’s homes, secure training
centres, immigration removal centres, police custody suites) and this will include people with learning disabilities.
Health services for adults and young offenders serving community sentences and those on probation are within
the responsibility of Clinical Commissioning Groups.

The CCGs have an important role in collaborating with NHS England to ensure there is a joined up pathway
between services for offenders with learning disabilities (IHAL, 2012). There need to be good links between
forensic services and other services such as mental health services, social care and the Criminal Justice System
(CJS), and the involvement of agencies such as housing, employment and education, to help to find pathways away
from the CJS. CCGs should check that Joint Strategic Needs Assessment (JSNAs) include information about people
with learning disabilities at risk of offending/reoffending. Health and Wellbeing Boards should facilitate integrated
working to reduce the likelihood of individuals coming into contact with the CJS (IHAL, 2012).

In the court system, reasonable adjustments are required, including the establishment of Liaison and Diversion
Development services, which require collaborative working between learning disability services and criminal justice
staff (Prison Reform Trust, 2012a).

Equal Access, Equal Care. Guidance for Prison Healthcare staff treating patients with learning disabilities (NHS
England, 2015): this guidance for prison healthcare staff focuses on several key areas for adults with learning
disabilities in prison including: tackling the social determinants of ill health in a prison setting, screening for
possible learning disabilities in prison and the benefits of having learning disability nurses and practitioners in
prison. It applies community healthcare policy and best practice regarding patients with learning disabilities to the
prison healthcare setting.

101
The report includes recommended actions for health care staff through the criminal justice system including:

• planning for prisoners with LD through health assessments and health action plans
EXAMPLES OF LOCAL DELIVERY: CRIMINAL JUSTICE SYSTEM

Joint working in Sefton

The Criminal Justice liaison system is in place between the Courts and Merseycare NHS Trust to enable
vulnerable adults including those with ASC (autism spectrum condition) to receive appropriate NHS
interventions. Joint planning with health partners is in place. The MARAC process is well established
with all criminal justice agencies for vulnerable adults.

Sefton Autism Self Assessment, 2012

Hindley

Case Study ‘We supported a young person who had a significant learning disability and an
attachment disorder. It was quite quickly apparent that he was struggling to cope with prison life. He
was on the Disruptive Prisoner Protocol but it was believed that moving him to another prison could
make his attachment disorder worse. After the multi-disciplinary team assessed his degree of ‘mental
disorder’ and his level of vulnerability and risk in prison, it was agreed that treatment in hospital was
the more appropriate option. He received the formal psychiatric assessments required for a transfer
under the Mental Health Act. We then made sure that he was appropriately supported in prison until
he could be transferred’.

Learning Disability Lead, HMYOI Hindley

(Department of Health, 2011)

4.5 PEOPLE WITH LEARNING DISABILITY WHO ARE PARENTS

Estimates of the total number of parents with learning disabilities in the United Kingdom vary widely,
from 23,000 to 250,000. There are increasing numbers of parents with learning disabilities in contact with
services (DH & DfES, 2007).

There are varying estimates of the proportion of parents with learning disabilities whose children are
removed from their care. It is likely that about 40% of parents are not living with their children. Fathers
are more likely to be living with their children than mothers. Six out of ten mothers (60%) who live either
on their own or with a partner, are not living with their children aged under 18 (DH & DfES, 2007).

Research by Cleaver and Nicholson (2008) compared the needs of 76 children from 10 different local
authorities living with a parent who had learning disabilities, with a group of 152 children where neither
parent had a learning disability. The researchers found that parents with learning disabilities rarely
approached children’s services for help – practitioners were more likely to seek help on their behalf.
Most parents who had a learning disability also had or had experienced: poor mental and physical health,
domestic violence, childhood abuse, growing up in care, or substance misuse. Many parents were also
bringing up children with learning disabilities, some of whom also had physical disabilities. The
researchers found that removing children from their parents was a ‘last resort’, and the decision to place
children away from home was taken after substantial input of services had been tried. They found little

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evidence of collaborative working between adult and children’s services, despite collaborative working
being recommended by Government guidance.

Involvement of services tended to be time-limited. Three years after referral, 78.8% of cases were closed
to children’s social care services and to learning disability teams within adult services. However, this
resulted in cyclical crisis episodes for families – over half the cases that were closed to children’s social
care services were re-referred, at least once, over three years, for example. The authors conclude that
short-term, targeted interventions by statutory agencies are insufficient – families need continued formal
and informal support, and contingency planning. Resources will often need to be committed for the
whole of a young person’s childhood.

Cheshire and Merseyside

There is a lack of readily available data on numbers of people with learning disabilities who are parents.
Data was requested directly from local authorities via local intelligence leads and provided by Adult Social
Care. The majority of LAs providing data said that parental status was not available. However, the data
provided showed that

 In Cheshire West and Chester in 2014/15 there were 32 people with learning disability who were
known to be parents who had a total of 55 children. None of the children were currently living in
the same household as the parent with learning disabilities.
 Sefton data provided for the previous needs assessment from 2009/10, reported there were 16
people with learning disabilities identified as parents within the local authority (Sefton LD
Partnership Board Self-Assessment report).
 In St Helens, as of July 2013, there were 16 adults with a learning disability recorded to have a
child.
 In Halton, as at July 2013, there were 11 adults with a learning disability recorded to have a child.

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Guidelines: Parents with a learning disability

The government has produced guidelines on working with parents who have a learning disability (DH and
DfES, 2007). They stated that the general aims of good practice in supporting parents with learning
disabilities are to:
 Improve the wellbeing of children, to enable them to be healthy, stay safe, achieve, make a
positive contribution and achieve economic wellbeing.

 Enable children to live with their parents (if this is consistent with their welfare) by providing the
support that they and their families need.

Good practice is underpinned by legislation and guidance that sets out the responsibilities of children’s
and adult services (listed in Appendix B, DH & DfES, 2007). Legislation and associated guidance says that;
 Children have a right to be protected from harm

 In family court proceedings, children’s interests are paramount

 Children’s needs are usually best met by supporting their parents to look after them.

 Parents with learning disabilities have the right to an assessment of their needs for support in
their daily lives, which should include any assistance needed with parenting roles. Parents
should have their assessed needs met, considering available resources, in line with Fair Access
to Care Services (DH, 2002). Assessments should only be done with informed consent, unless
required by the Courts.

 Parents with learning disabilities are entitled to equal access to services, including parenting
support and information services.

 Public bodies have a duty to actively promote equality of opportunity for people with learning
disabilities.

 Good practice is also underpinned by an approach to parenting and learning disability which
addresses needs relating to both impairment, and also the barriers of unequal access.

Key features of good practice

The government guidance set out five key features of good practice in working with parents with learning
disabilities;

1. Accessible information and communication

• All services for parents and children should make information and communication accessible for
people with learning disabilities (example in Box 3). Information should be in formats suitable for
people with learning disabilities, such as Easy Read, information on CD/DVD, and fully accessible
websites.

• People with learning disabilities need to hear the message that it is not unusual to need support
with parenting.

• Professionals should avoid using jargon.

2. Clear and co-ordinated referral and assessment procedures and processes, eligibility criteria and
care pathways

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 • Eligibility criteria and care pathways should prevent avoidable difficulties from arising by
recognising low levels of need, which are likely to undermine children’s welfare if unaddressed.

• Adult and children’s services, and health and social care, should jointly agree local protocols for
referrals, assessments and care pathways, to prevent adults and children from falling between
services. Attention should be paid to promoting good communication between different
agencies. This may be achieved through liaison posts, joint training or joint network, for example.
Local protocols should clearly specify responsibilities for assessment and care planning.

3. Support designed to meet the needs of parents and children based on assessments of their needs
and strengths

• A range of services are required. All families are different and at different stages of their life cycle
families require different types of support. For example, if parents with learning disabilities are to
benefit from parenting education programmes – whether run in a mainstream or specialist setting
– such programmes will need to be adapted to meet the particular learning needs of the parents
concerned (this is a requirement under the Disability and Equality Act, 2010).

4. Long-term support where necessary

• Some parents with learning disabilities will only need short-term support, such as help with looking
after a new baby or learning about child development and childcare tasks. Others, however, will
need on-going support.

5. Access to independent advocacy

• Advocacy and self-advocacy should be made available to help parents access and engage with
services. Independent advocacy should always be provided where children are the subject of a
child protection plan and/or care proceedings instituted.

(DH and DfES, 2007)

Good practice where safeguarding procedures are necessary

Parents have a right to a private and family life, but children have a right to protection from harm. The
interests of the children should be paramount. They also have the right to receive the necessary support
to remain living with their parents wherever possible.

 Local authorities have a duty, under the Children Act 1989, to ascertain the wishes of children
when conducting assessments and making decisions about service provision. Children have the
right to information at all stages of the safeguarding process. Children have the right to
participate in child protection conferences, subject to their age and understanding.
 When a key worker is appointed for a child who has a learning disability, the key worker should
have experience of learning disability, or access to expertise in the area.
 Where children are subject to a child protection plan, it is good practice to appoint a key worker
for the parent with learning disabilities, as well as for the children.
 Local authorities should promote contact with family members for children who are the subjects
of care orders, unless the court have given them permission to refuse contact.
 Where necessary, placement with extended family members should be considered.

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Good practice in commissioning

 It is important that adult and children’s services take joint responsibility for commissioning
services that meet the needs of parents with learning disabilities and their children. It is good
practice to have formal joint commissioning arrangements which are underpinned by the pooling
of budgets.
 Service user perspectives should inform the development of mainstream and specialist services.

(DH and DfES, 2007)

The CCG Commissioning Guide (IHAL, 2012) added that people with learning disabilities need appropriate
contraceptive advice to avoid unwanted pregnancies (see Section 3.3).

EXAMPLE OF LOCAL DELIVERY: PARENTS WITH LEARNING DISABILITIES

Parents together, Knowsley

Knowsley Parents Together is run by Knowsley Disability Concern (KDC), which is an independent charity.
Knowsley Parents Together believes that everyone has a right to be a parent. For some this is
challenging. Knowsley Parents Together supports parents with learning support needs to overcome the
barriers they face. The charity provides peer support groups across Knowsley where parents can come
together and share their experiences of the barriers they face as parents over a cup of tea. Staff help
them to find solutions and to support each other. Parents themselves decide what the group should talk
about. The groups are held in Surestart Children’s Centres in Halewood, Huyton, Kirkby and Whiston.
There is an open invitation and everyone is welcome. Parents Together also works alongside KDC’s
Citizens Advocacy service and can arrange an independent person to help parents have their voices
heard. Knowsley Parents Together can provide training for parents to learn about how to support each
other, and training that is tailored for particular organisations, for example, the Equality Act and Making
Information Easy to Read.

Contact: phone: 0151 480 4090 for more details

4.6 EMPLOYMENT AND BENEFITS

EMPLOYMENT

Levels of employment amongst people with learning disabilities are generally a lot lower than amongst
the general population. In 2012/13, only 7% of working age adults with learning disabilities were in any
form of paid or self-employment, part time or full time (9,845 individuals). The number in paid
employment has increased nationally by 21.9% since 2008/9, although caution must be taken when
interpreting this figure as the majority of this increase took place in a single year (2008/9 -2009/10) and
may be due to local authorities improving their data collection. Recent reports in fact suggest that the
numbers of adults with learning disabilities has in fact fallen slightly in the past few years. The majority
(70.3%) of those in paid or self-employment worked for less than 16 hours per week. Men were more
likely to be employment than women; 64% of adults with learning disabilities in employment are men,
and more likely to be working 30 or more hours per week (79.5% of 1,075 individuals). In addition, 9,245

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working age adults with learning disability were reported to be engaged in unpaid voluntary work (only)
in 2012/13; this represents a 19.2% increase based on the number recorded in 2008/9 (HSCIC, 2014).

The National Autistic Society survey found that only 15% of adults with autism were in full-time paid
employment. Of those aged 16-24, one third were not in education, employment or training (NEET). Of
those aged over 55, 41% had spent ten years or more with no paid job and 43% had left or lost a job
because of their condition. Only 10% received employment support, whereas 53% would like such
support (Bancroft et al, 2013).

The survey’s authors recommended that simple adjustments like making job interviews more accessible
and assistance to understand the ‘unwritten rules’ of the workplace would help. Under the Disability
Discrimination Act (and now, the Disability and Equality Act, 2010), employers are obliged to make
adjustments in the workplace for staff if they are disadvantaged, including recruitment procedures and
employment policies (Broad, 2007). A survey carried out by Broad (2007) for ‘Community Care’ found
that 77% of firms used normal recruitment methods when handling applications by people with learning
disabilities, as opposed to the specialist services that exist. If more employers had specialist recruitment
schemes that made it easier for people with learning disabilities to apply for jobs then a lot more would
be in work.

Assistive technology and telecare (AT&T) can enhance the employability of people with learning
disabilities, as demonstrated by the TATE (Through Assistive Technology to Employment) project. The
project was a consortium of 18 partners from commercial, voluntary and public sectors, who worked
together to identify the benefits of providing assistive technology and telecare to people with a learning
disability and those who support them (Beyer et al, 2008). (See Housing, Section 4.1 for more details on
assistive technology).

Approaches to employment for those with learning disability need to be reviewed. Recent changes to the
benefits system (see ‘Benefits’ heading below), mean that individuals may not always be better off in
work. The paid employment landscape has become much more challenging and appears less willing to fit
in with the requirements of different individuals, but there is currently more pressure than ever on
people to look for work. Some people with learning disability will be employed or supported to be long
term volunteers on council sponsored schemes. However, a lot of these and other jobs are not ‘for life’.
Casual work is problematic, as individuals may be taken off ESA (employment support allowance) or other
disability related benefits to take a casual job. They may then be unable to access the same benefits
when the job finishes. It is perhaps time for a different emphasis on employment/occupation for those
with learning disability, with a consideration that volunteer positions, which can potentially offer some of
the same social and psychological benefits as paid employment, may realistically be the best solution in
many cases.

Local data

Any paid employment (up to or more than 16 hours per week)

Figure 14 shows levels of paid employment amongst those of working age (18-64) who have a learning
disability and who are known to social services. A paid employee will be earning at or above the
minimum wage. For this dataset, being in paid employment is measured using the following two
categories:

 Working as a paid employee or self-employed (16 or more hours per week); and,
 Working as a paid employee or self -employed (up to 16 hours per week).

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Data for Cheshire and Merseyside local authorities shows that employment levels are highest in Cheshire
East (8.2%) and St Helens (6.1%) as shown in Figure 14. These levels are above the national average of 6%
and well above the average for the North West of 4.2% (2014/15).

Employment levels are very low in Warrington, Sefton and Wirral, at under 3% (2014/15).

Figure 18: Proportion of working age adults with learning disabilities in any paid employment, 2014/15

9
North West Average (4.2%) England average (6%)
8

4
8.2
3 5.7 5.9 6.1

2 3.6 4
2.7
1 1.9 1.7
0
Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens Warrington Wirral
East West And
Chester

Source: NHS Information Centre, Adult Social Care Outcomes Framework for 2014/15 (ASCOF measure 1E). Adults with
learning disabilities known to Councils with Adult Social Services Responsibilities (CASSRs) in paid employment at the time
of their latest review.

Gender

Nationally and in the North West, males with learning disability have higher levels of employment than
females, as shown in Table 34.

With the exception of Halton and Wirral, employment rates are higher amongst males compared to
females in each local authority in Cheshire and Merseyside. Rates are highest amongst males in Cheshire
East (9%) where the rate for females is also the highest (7%). Conversely, in Halton the rate of
employment among females (5%) is twice that among males (2.5%)

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Table 34: Any paid employment amongst male and female adults with learning disabilities
Numbers in paid employment as % of all those with learning disability of working age (18-64) and known to
adult social services, 2014-15.

Any paid Male Female

employment number in % in employment number in % in employment
employment employment
Cheshire East 50 9% 25 7%

Cheshire 30 5.7% 20 5.6%

West And
Chester
Halton 5 2.5% 10 5%

Knowsley 15 4.1% 10 4%
Liverpool 50 6.2% 30 5.5%

Sefton 10 2.2% 5 1.4%

St Helens 20 7.6% 10 4.5%

Warrington 5 1.8% 5 1.6%

Wirral 15 2.7% 10 2.7%

North West 480 4.6% 270 3.7%

England 4660 6.4% 2765 5.3%

Source: NHS Information Centre, Adult Social Care Outcomes Framework for 2013/14 (ASCOF measure 1E). Adults with
learning disabilities known to Councils with Adult Social Services Responsibilities (CASSRs) in paid employment at the time of
their latest review, receiving at least the minimum wage.

Paid employment of 16 hours or more per week

In 2013/14, as few as 0.9% men and 0.4% women with learning disability worked for 30 or more hours
per week. In Halton, Knowsley, Sefton, St. Helens and Warrington, there was no-one with a learning
disability known to social services recorded as being in paid employment for 30 hours or more per week
in 2013/14. In Liverpool there were 80 people, in Cheshire East there were 20, in Wirral there were ten
and in Cheshire East there were five.

Table 35 shows the numbers of adults with learning disabilities working 16 hours or more in 2013-14 in
paid employment (at or above the minimum wage). There were none recorded in Halton. In St Helens,
whilst no males or females were recorded the total for the local authority was 5 as values under 5 have
been supressed. The local authority with the largest number of individuals working 16 hours or more was
Liverpool (90 individuals) and the proportion of people with learning disability in paid work of 16 hours or
more per week is three times the national average, at 6% of all those with a learning disability (2%
nationally).

Gender

Amongst males in Liverpool and Cheshire East, 8% and 7% respectively are working 16 hours or more
(considerably higher than the national average of 3%). For females. Cheshire East had the highest
proportion working 16 hours or more (6%) with Liverpool (3%), Sefton (2%) and Warrington (2%) also
above the national average (1%) (Table 35).

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Table 35: Paid employment of 16 hours or more per week amongst male and female adults with
learning disabilities
Numbers in paid employment 16 hours+ as % of all those with learning disability of working age (18-64) and
known to adult social services, 2013-14.

Paid work 16 Male Female

hours or more
per week number in % in employment number in % in employment
employment employment
Cheshire East 40 7% 25 6%

Cheshire West 15 3% 5 1%
And Chester
Halton 0 0% 0 0%
Knowsley 5 1% 0 0%
Liverpool 70 8% 20 3%
Sefton 5 1% 5 2%
St Helens 0 0% 0 0%
Warrington 5 2% 5 2%
Wirral 15 2% 0 0%
North West 305 3% 120 1%
England 2105 3% 835 1%

*Note: totals of less than 5 would have been recorded as 0, because of the suppression of small numbers.

Source: NHS Information Centre, Adult Social Care Combined Activity Returns data (ASC-CAR) for 2013/14. Adults with
learning disabilities known to Councils with Adult Social Services Responsibilities (CASSRs) in paid employment at the time of
their latest review, receiving at least the minimum wage.

It should be noted that interpretation of this data needs to take into account the possibility that low
levels of employment could be an indication of success. A person with learning disability who becomes
employed may be taken off the social services register. Also, as noted in the introduction to this section,
different local authorities may have different ways of interpreting who to include as ‘employed’.

Three local authorities; Cheshire West and Chester, Wirral and Sefton provided additional information on
employment among adults with learning disabilities. The data provided by Cheshire West and Chester in
2014/15 suggests that the number of adults working 16 hours or more has remained stable compared
with the Adult Social Care Combined Activity Returns for 2013/14 (20 individuals). The number reported
by Wirral is considerably lower (4 individuals) when compared to the numbers in table 35 which may be
due to differences or delays in reporting. Wirral also provided the number of individuals known to be
seeking work; there were 63 individuals representing 6.8% of adults with learning disability known to the
local authority.

Sefton provided further information on the type of work undertaken by 103 adults with learning
disabilities known to the local authority who were in voluntary or paid employment. Fifty four individuals
were employed in unpaid voluntary work. Of the 49 who were in paid employment, a third (33%) worked
in the retail or catering industry (with roles including shop assistants and kitchen, bar and waitress roles)
and just under a quarter (24%) worked in manual roles (including labouring, cleaning, gardening and
handyman positions).

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 GUIDELINES: EMPLOYMENT

The Care Act 2014: creates a duty for Local Authorities to promote individuals wellbeing including
“participation in work, education, training or recreation” (Chapter 23, Part 1, Para 1)

Social determinants of health: The CCG Commissioning Guide noted that CCGs will need to work with
Local Authorities and public health to tackle the social determinants of poorer health, such as housing,
discrimination, unemployment and social exclusion (IHAL, 2012). Commissioning responsibility for
these issues sits with Local Authorities.

If more employers had specialist recruitment schemes that made it easier for people with learning
disabilities to apply for jobs, then a lot more would be in work. The National Autistic Society are
working with the Government to improve employer awareness of how to support people with autism
in the workplace. As part of their campaign ‘The undiscovered workforce’, they are encouraging MPs to
take a lead on these issues in their own constituencies (Bancroft et al, 2013).

The Joseph Rowntree Foundation have produced a guide for employers on employing people with
learning disabilities (JRF, 2004)

EXAMPLES OF LOCAL DELIVERY: EMPLOYMENT

The Department of Health have produced a guide that sets out learning and best practice from the
government’s Valuing People Now Employment Demonstration sites. It is aimed at those who want to
develop good employment support for people with learning disabilities in their locality (DH, 2011b).

Norton Priory museum, gardens and visitor centre, Halton

Halton Community Services have opened new work based opportunities across the borough which will
enable people with disabilities to learn pre-employment skills in order to access the workplace. Resources
were diverted from traditional ‘bricks and mortar’ based day care services to create opportunities
structured for business and linked to the commercial world. This was made possible through strong links
with Norton Priory Museum, a key service partner, which provides work experiences for those with learning
disability and autism in various settings, including the Refectory Cafe, Tea Room, Ice-cream making Parlour,
Norton Brewing (a real ale brewery), the Bottling Plant and the Craft Shop.

The 22 community venues across the borough provide meaningful daytime activity and multiple work
experience opportunities for 145 adults with a learning disability or autism.

Contact: shirley.dempsey@halton.gov.uk

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 Sefton coast and countryside biodiversity and access project

The Biodiversity and Access Project values and involves people with learning disabilities and other hard
to reach groups. The groups are involved in practical environmental projects along the coast and in the
countryside. Individuals are offered the chance to improve their skills by being involved in the project.
They can also learn new skills and improve their health and wellbeing, gaining qualifications and work
experience along the way.

For more information, go to http://sefton.ldpb.info/data/file/file/BAP%20Transitions.pdf

Achieving People: Sefton

‘Achieving People’ supports people aged 18 – 64 in Sefton who have a learning disability into unpaid
work placements and paid employment.

Clients are supported on a one to one basis by a mentor in their chosen opportunity.

Further details:
http://www.volunteeringsefton.org.uk/index.php?option=com_content&view=article&id=105&Itemid=
89

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BENEFITS

Mencap (2012) noted that changes to the benefits system under the Welfare Reform Act 2012 place a
greater focus on those with high-level needs, reducing the availability of benefits for those with low and
moderate needs.

The Act changes the way many housing options are funded, which will affect the ability of local
authorities to support independent living for people with a learning disability.

Many judgements relating to workplace capability assessments have been overturned on appeal. There
are likely to be even more individuals who have been wrongly assessed but have not appealed. Often,
people will not feel strong enough or have enough support to go through with an appeal. Mencap
pointed out that learning disability is a lifelong condition that is not going to get better (Mencap Liverpool
on Radio Merseyside, Feb 2013).

4.7 TRANSPORT

People with learning disability rely greatly on public transport, as most do not drive. Public transport is
important for independence, but many face problems such as bullying or stigma.

Supported by the Brandon Trust, the ‘100 People, 100 Voices’ learning disabilities conference in 2012
gave a voice to over 150 people with learning disabilities. They spoke about the problems they face in
gaining employment and using public transport. A report was produced following on from the conference,
entitled ‘100 Voices On Transport’ (Brandon Trust, 2012). The report was written for and by people with
learning disabilities and autism, and outlines public transport-related issues, offering possible solutions
along with case studies.

In the report, people with learning disabilities and autism said that using public transport is very difficult
for them, because:

 It is too expensive
 Lack of availability, in terms of both routes and times
 Lack of accessibility. This refers to every aspect of transport: from the vehicles themselves, to
train and bus stations, to timetables and signage
 Fear of being abused or of being mistreated and disrespected by bus drivers, train and station
staff and other passengers. Some people reported frightening experiences, especially on buses
(bullying and teasing)
 Lack of understanding, on behalf of the general public, of the barriers a person with a learning
disability faces when travelling alone on public transport. Some people can be impatient and
rude
 Inability to use concessionary bus passes before 9.30am and therefore having to pay for a taxi to
go to college or work
 Lack of appropriate training and support on how to use public transport for people with a
moderate learning disability

(Brandon Trust, 2012)

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GUIDELINES: TRANSPORT

People with learning disability and autism at the 100 Voices conference said that they would like to
see:

 Better transport solutions for people with learning disabilities, organized by councils,
charities and communities in partnership
 Wider time coverage of concessionary travel passes so that they are not restricted to
certain hours
 Training for bus and taxi drivers, and other transport staff, on the needs of people with
learning disabilities
 More public awareness of learning disabilities and increased acceptance of disabled
people on public transport. This can be achieved through media coverage and campaigns
 Better accessibility on buses and trains, fewer environmental barriers
 Easy read complaints procedures
 Easy read timetables
 A telephone number displayed at bus stops or in train stations that people can call if the
bus/train is late or if they require assistance
 Cameras on buses to capture abusive behaviour
 More travel and transport training for people with learning disabilities, like the ‘Travel
Buddy’ scheme
 More engagement with local MPs and people who can influence social policy so that the
views of people with learning disabilities are heard.

(Brandon Trust, 2012)

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5. LEARNING DISABILITY SERVICE PROVISION AND USE

5.1 TRANSFORMING CARE AGENDA

The number of adults with learning disabilities accessing long stay inpatient services has declined
significantly over the past three decades from over 30,000 in 1987 to well below 5,000 in 2014/15.
However, for a minority of people there remains an over reliance on inpatient services for those who
could receive support at home and be closer to their families. Whilst hundreds of people have been
discharged from hospital, others continue to be admitted to assessment and treatment units. This
minority who display challenging behaviour are a diverse group; some may display self-harming or
aggressive behaviour unrelated to a mental health condition, some are at risk of contact with the criminal
justice system and some have been in inpatient care for many years. For those that do need specialist
support in hospital, NHS England recommend that their stay be as short as possible.

Forty nine Transforming Care Partnerships have been established (between NHS England Specialist
commissioners, CCGs and Local Authorities) who will engage with those experiencing these services, their
carers and families to agree implantation plans, in line with those set out in Building the Right Support
(NHS England, 2015a), by April 2016. These partnerships will work with providers to mobilise innovative
care, support and housing which will focus on service redesign, scaling up community based services and
securing the capital to deliver housing need. This will be achieved by reducing use of inpatient provision
by approximately 50% over the next three years.

Changes to services are intended to ensure that people with learning disability and autism, like any
person, can expect to live in their own homes, develop and maintain positive relationships and get the
support they need to be healthy, safe and an active part of society. Key changes to services that the
partnership boards will achieve include:

 Ensure that the right community support and housing package for those for whom hospital has
in effect been a permanent home and ensuring dowries are in place so that those who have been
an inpatient for five years or more are in place when they are ready to be discharged.
 Nationally, just under 40% of those who have been inpatients for five years of more have had
referral and discharge dates agreed under care and treatment reviews. For those in inpatient
settings due to clinical issues or Ministry of Justice restrictions the challenge is to build the right
set of services in the community for the remainder of these individuals.
 Preventing new admissions and reducing the time spent as inpatients by providing alternative
care and support is as important as discharging those currently in hospital. This will require
advocacy, early intervention, prevention and ensuring the right set of services are available in
the community.
 Transformation will meant redesigning services to meet a better range of needs particularly by
better serving children, young people and adults with learning disability and/or autism who: have
a mental health condition, display aggressive or self-injurious behaviour, display risky behaviour
which could lead to criminal justice system contact and lower level support to those who may
not be known to health and social care services from disadvantaged backgrounds who display
behaviour and may lead to criminal justice contact.

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CHESHIRE AND MERSEYSIDE

NHS England have commissioned a report to directly assess these issues including bed and admission
levels and explore provider capacity (Vose, 2016). The aim of this section of the needs assessment is to
complement the wider social and health issues previously discussed in this report by providing baseline
data on service use among adults with learning disability and assisting informed decision making.

5.2 SERVICE PROVISION

There are three NHS providers of learning disability services in Cheshire and Merseyside: 5 Boroughs
Partnership with provides services for residents of Halton, Knowsley, St Helens, Warrington and also
Wigan; Cheshire and Wirral Partnership (CWP) which provides services for residents of Cheshire West
and Chester, Cheshire East, Wirral and Trafford, and Mersey Care which provides services for residents of
Liverpool, Sefton and Kirkby. All three organisations provide both community and inpatient based
services for people with learning disabilities.

5 BOROUGH PARTNERSHIP

5 Borough Partnership has four Specialist Community Learning Disability Nursing Teams based in
Warrington, St Helens, Knowsley and Halton. The team provide community based support for people
with learning disabilities including health promotion, co-ordination of care, medication monitoring and
behavioural intervention. Advice and practice is also provided in areas such as: behavioural difficulties,
mental health assessments, interventions, sexual health and knowledge assessments and guidance,
dementia assessments and support and, epilepsy management. In addition, they provide individual
therapies such as bereavement counselling, specialist physiotherapy and Solution Focused Intervention.

5 Borough Partnership also provide inpatient care for residents of Halton, Warrington and Wigan at the
Byron Assessment and Treatment Unit at Hollins Park Hospital, Warrington which provides care for adults
with learning disability and mental health problems who have been admitted formally under the Mental
Health Act or informally.

CHESHIRE AND WIRRAL PARTNERSHIP

Cheshire and Wirral Partnership (CWP) has four Specialist Community Learning Disability Teams for
Wirral, West Cheshire; with bases in Cheshire and Winsford, Cheshire East with bases in Macclesfield and
Crewe, and Trafford. The team plan and provide a range of services for people with learning disabilities
who experience additional health needs as well as advice and training for family, carers and support staff.
The teams consist of community learning disability nurses, psychiatrists and clinical psychologists, speech
and language and occupational therapists, physiotherapists and health facilitation nurses.

CWP has two assessment and treatment units providing specific inpatient assessment and treatment for
people with learning disability; the Eastway Assessment and Treatment Unit in Chester and the
Greenways Assessment and Treatment Unit in Macclesfield. In addition they provide adult respite care at
Crook Lane Respite Unit in Winsford and Thorn Heys Unit in Oxton, Wirral. The respite units provide short
breaks for adults with learning disabilities who have additional complex needs such as profound and
multiple disabilities or challenging behaviour. CWP also provides a low secure service at the Alderley Unit;
a 15 bed all-male unit for adults with mild to moderate learning disabilities who have or are assessed
likely to commit and offence.

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MERSEY CARE

Mersey Care has two Learning Disabilities Community Teams in Sefton and Liverpool which support
people with learning disabilities and substantial and complex health needs. The team also provides a
bespoke care pathway for people with Down’s syndrome and dementia. In addition, Mersey Care has a
Learning Disabilities Community Focus Team based in Southport which provides daily activity for people
with learning disability through physical engagement, social assessment of needs and assessing the local
community. Mersey Care has two specialist Asperger’s Services which diagnoses and provides specialist
support for people living with Asperger’s based in Liverpool and Sefton. Sefton also has an adult
Attention Deficit Hyperactivity Disorder (ADHD) service which provides assessment and diagnosis for
adults transferred by their GP as well as supporting patients transitioning from CAMHS and community
paediatrics.

Mersey Care provides inpatient services for people with learning disabilities and additional needs through
the STAR Assessment and Treatment Unit based at Mossley Hill Hospital. The Unit also provides inpatient
services for young people aged 16 to 18 years who are transitioning from children’s services and are
already in the care of a learning disabilities consultant. Learning disabilities assessment and respite is also
provided a Wavertree Bungalow for those with learning disabilities and additional complex health needs.
The Bungalow has five beds for respite breaks and one assessment bed. Finally, Mersey Care also
provides a Forensic Personality Disorder and Autism Spectrum Disorder Assessment and Liaison Service
(FPAALS) which is a specialist assessment and liaison service for people from Merseyside and Cheshire
who experience significant personality disorder or autism spectrum disorder problems who are also
thought to pose a potential serious harm to others.

5.3 SERVICE USE

Two of the three providers supplied information on patient referrals, initial assessments, referrals,
contacts with community teams; inpatient stays, and discharge from services. Data was provided for a
minimum of one year with data from Mersey Care and 5BP covering a three period and CWP covering a
five year period. The data for each provider is summarised below but the key findings for all three
services suggest that:

 Mersey Care and CWP had 1,415 and 1,927 individuals respectively with learning disabilities on
their case load in 2015.
 The majority of clients attended the services in their LA of residence although there was some
crossover within and across both provider organisations
 Three fifths of clients at Mersey Care and CWP services were male; the majority were between
21 and 60 years and of white ethnicity.
 There were roughly 3,500 patients referred to each provider across the three year period with
the exception of 5 boroughs where the number of referrals was lower at just under 2,000. Across
the three services, the majority of referrals where source was known were made by GPs. The
number of patients with a repeat referral in a 12 month period differed between services with 13%
of Mersey Care patients re-referred compared with 47% of CPW patients.
 Mersey Care have seen an increase in the mean number of inpatient days (from 10.3 in 2012/3
to 12.5 in 2014/15) whilst CWP has seen a decline (from 26.9 in 2012 to 18.9 in 2014).
 Both Mersey Care and CWP had roughly 30,000 contacts each in the last year of which
approximately two thirds were seen face to face. Just under one in ten contacts were

117
 unsuccessful with the majority being due to the client not attending or cancelling the contact. At
5BP the number of community team contacts was slightly lower at just over 17,000.
 The majority of discharges for all three providers were made on medical/ professional advice.

MERSEYCARE

PATIENT CHARACTERISTICS

There were 1,415 individuals with LD on the Mersey Care caseload in 2015 (as of 24/11/2015).The vast
majority (99%) of clients were resident in Cheshire and Merseyside with the largest proportion residents
of Liverpool CCG (54%) followed by Southport and Formby (24%) and South Sefton (21%).
Three fifths (60%) of clients were males and there was little variation across the teams and the majority
of clients (88%) were of white British ethnicity. The accommodation status and employment status of the
majority of clients (81.6%) was unknown.

The majority of patients were aged 21-64 years (82.3%) with 9.8% under 21 years and 7.6% aged 65 years
and over. Individuals on the Asperger’s team caseloads were younger (18.5% under 21 years) than on the
learning disability teams caseloads (7.4% under 21 years) while a higher proportion learning disability
team clients were aged 65 years and older (9.3% compared with 1% of those accessing Asperger’s Teams)

Liverpool Learning Disability Team had the largest number of clients (564 individuals, 39.9%) followed by
Southport Learning Disability Team (25.8%) and Liverpool Asperger’s Team (194 individuals, 13.7%).

REFERRALS

Across 2012/13 – 2014/15 there were 3,865 referrals made to the community learning disability and
Asperger’s Teams; the largest proportion of these were made to the Liverpool Learning Disability Team
(40%) followed by the Liverpool Asperger’s Team (25%). There is a significant drop in the number of
referrals in 2015 (from 1,438 in 2014 to 329 in 2015) although it is important to note that data for 2015
was extracted in mid-November (19/11/2015) so does not reflect a full year’s worth of data. Data was
provided on the referral reason but the majority were recorded as unknown or unspecified (99.8%). In
total, 3,863 of the 3,865 referrals made were accepted (99.9%).

Table 36: Mersey Care Learning Disability Referrals by year and team.

Team 2012 2013 2014 2015 Grand Total

Asperger Team Sefton <5 139 47 188
Aspergers Team Lpool 210 304 377 76 967
Community Focus Team <5 <5
Liverpool 384 533 531 117 1565
Sefton 127 166 170 32 495
Southport 154 217 220 57 648
West Lancs <5 <5
Grand Total 878 1220 1438 329 3865

Detailed information was provided on referral source; a full breakdown is provided in Appendix M1. The
largest proportion of referrals over the four year period (2012-2015) were made by a general practitioner

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(32%, 1,233 referrals). A further 12% were referred by either a social worker or social services. Ten
percent were referred by a carer and 3% self-referred.

REPEAT REFERRALS

Of 3865 Learning Disabilities referrals (2719 individual patients) between 01/04/2012 and 31/03/2015 a
total of 501 patients were re referred to LD Services. In 2014, 1208 Patients were referred with a total of
1438 referrals, of the 1208 Patients, 200 patients were re referred to LD Services.

INITIAL ASSESSMENTS

Data was provided on 1660 initial assessments undertaken between 2012 and 2015. The breakdown of
assessments by year is shown in figure 19 below

Figure 19: Number of initial assessments, 2012-2015, Mersey Care

600

500

400

300
531 521
200
338
270
100

0
2012 2013 2014 2015

Table 37 below shows the outcome of initial assessments undertaken between 2012 and 2015. The
majority either had another contact to be arranged (36.6%) or had another appointment given (19.8%).
8.3% had no further contact after the initial assessment.

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Table 37: Outcome of initial assessments 2012-15, Mersey Care

Outcome of assessment Total %

Another Appointment Given 328 20%
Appointment /Contact Later 94 6%
Appointment /Contact TBA 425 26%
Discharge From Care 32 2%
Discharge to Other Agency <5
No further Contact 137 8%
Ref Cl Nurse Spec <5
Ref Other Services <5
Ref to Alternatives 6 0.4%
Ref to CMHT <5
Ref to Consultant <5
Ref to GP <5
Review Again <5
Admitted to Ward <5
Null 625 38%
Total 1660

LD CONTACTS

In total, patients with Learning Disabilities known to Mersey Care had 113,666 contacts for learning
disability over the three year period (2012/13 – 2014/15). This figure is based on contacts for learning
disability made with any team including non-Mersey Care services in West Lancashire. In 2014/15 there
were 35,165 contacts of which 67% (23,593 contacts) were seen and a further 24% (8,440 contacts) were
non-face-face contact. Of the remaining 9%, where the contact was not successful, the majority were
because the service user did not attend (4%, 1,342) or were cancelled by the service user (3%, 975
contacts).

LD COMMUNITY TEAMS

Across the three year period 3,693 patients who had a total of 112,545 contacts with the Learning
disability community teams, specialist Asperger’s team, Community Focus Team and Mental Health and
Learning Disability Physio Team. In this case contact includes those not only seen but also contacts that
were DNAs, cancelled or declined.

The mean number of contacts per year per person has declined over the three year period from 17.1 in
2012/13 to 13.7 in 2014/15.

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Figure 20: Mean number of annual contacts with Community Learning Disability teams, Mersey Care

18.00

16.00

14.00

12.00

10.00
17.11 16.66
8.00
13.68
6.00

4.00

2.00

0.00
2012/13 2013/14 2014/15

As previously highlighted, 67% of contacts in 2014/15 were seen face to face and a further 24% were
non-face-to-face contact. Of all contacts, 9% were unsuccessful. Figure 21 below provides the proportion
of contacts which were seen, non-face-to-face contact and unsuccessful; the proportion across the teams
was fairly similar however the Liverpool and Sefton Asperger’s teams and the Community Focus Team
had a slightly higher proportion of unsuccessful contacts and the Liverpool and Sefton Community
Learning Disability Teams had a slightly higher proportion of non-face-to-face contacts.

Figure 21: Contact outcome by Learning Disability Service, Mersey Care 2014/15

100% 4%
5% 6% 9%
11% 17%
90% 19%
13% 1% 22% 13%
80% 6% 31%
39%
70%
60%
50%
40% 82% 78%
75% 76% 72%
30% 65%
56%
20%
10%
0%
Aspergers Asperger Community Liverpool Sefton Southport Other
Team Lpool Team Sefton Focus Team

Seen Non fact to face contact Unsuccessful

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LENGTH OF INPATIENT STAY

The total number of inpatient days remained steady between 2012/13 and 2014/15 at just over 4,500 per
year. The mean length of inpatient stay as increased by one day per year over the three year period from
10.3 in 2012/13 to 12.5 in 2014/15.

Figure 22: Mean length of inpatient stay, Mersey Care

14.0

12.0

10.0

8.0

6.0 12.5
11.3
10.3
4.0

2.0

0.0
12/13 13/14 14/15

NUMBER OF DISCHARGES BY REASON

There were 1,229 discharges recorded across the three year period (2012/13 – 2014/15) of which the
vast majority (99%) were on medical advice.

Table 38: Discharge of individuals with Learning Disabilities by reason, Mersey Care

Year On Medical Medical Advice - Self Or Relative Died Total

Advice Expected Return
12/13 451 <5 <5 453
13/14 399 <5 401
14/15 370 <5 <5 375

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CHESHIRE AND WIRRAL PARTNERSHIP (CWP)

PATIENT CHARACTERISTICS

There were 1,927 individuals with learning disability on the CWP caseload in 2015 (as of November 2015).
The vast majority of clients were resident in Cheshire and Merseyside (91%) with the vast majority of all
clients resident in Wirral (42%) followed by Cheshire West and Chester (25%) and Cheshire East (21%).
Three fifths of clients (60%) were male. The employment status of just over half of clients was unknown
(55%). A further 25% were known to be in employment, 9% were in unpaid voluntary work and 8% were
unemployed and seeking work. The accommodation status of just over half of clients was unknown (54%).
A further 22% were in settled mainstream housing, however the next largest proportion (7%) were
reported to be squatting.

The majority (65%) of clients were aged between 21 and 60 years. A quarter of clients were aged 20 years
and under 2% were aged 10 years and under. Older adults (aged 61 years and over) accounted for 10% of
clients with those aged 71 years and over accounting for 3%. Clients with learning disability were slightly
younger than those with Asperger’s; data was compared across the four year period as the number of
clients with Asperger’s in a single year was quite small. Overall, 41% of clients with LD were aged
between 11 and 20 years compared with 5% of those with Asperger’s. A considerably higher proportion
of those with Asperger’s were aged between 31 and 50 years (54%) compared with those with LD (21%).

REFERRALS

There were 7,836 referrals made for 2,132 individuals with Learning Disability at CWP over the five year
period. The average number of referrals made per patient over the 5 years period was 3.7 (range 1 to 97).
The majority of referrals were community teams (60%) followed by inpatient services (29%).

Table 39 shows the source of referral for people with learning disability. Please note that the total
number is greater than the number of patients as individuals may have been referred by more than one
referral source over the period. The largest proportion were referred from sources categorised as other
(48%). This was followed by GP referrals (22%) and referrals from staff (17%) within the provider or in
community teams including learning disabilities, mental health and alcohol. A further 6% were referred
by an outside agency, 5% by a contact which included carers, relatives and ‘concerned other’, 1% were
referred by a school and 1% self-referred.

Table 39: Referrals by source, 2010-2015, Cheshire and Wirral Partnership

Referral source Number of referrals %

Agency 209 6%
Contact 162 5%
GP 765 22%
Other 1629 48%
School 48 1%
Self 39 1%
Staff 572 17%
Total 3424

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REPEAT REFERRALS

Between 2012 and 2015, there were 11,762 referrals made for 3187 patients; of these 10,910 were re-
referrals (93%) over the four year period for 2,335 patients (73%). Figure 23 below shows the proportion
of re-referrals in a 12 month period; the blue bar indicates the number of re-referrals which occurred in
each 12 month period whilst the red bar indicates the proportion of patients referred during the 12
month period who were referred more than once. Data for 2015 is partial data, but the preceding years
suggest that the number of re-referrals has increased year on year from 68% on 2012 to 73% in 2014. The
number of patients re-referred has also increase from 40% in 2012 to 47% in 2014.

Figure 23: Repeat referrals, 2012-2015, Cheshire and Wirral Partnership

80%
72% 73%
71%
70% 68%

60%

50% 47%
42% 42%
40%
40%

30%

20%

10%

0%
2012 2013 2014 2015
Re-referrals Re-referred patients

INITIAL ASSESSMENTS

There were 2,183 initial assessments undertaken over the five year period of which 920 were outpatient
assessments.

LEARNING DISABILITY CONTACTS

In total 3,964 Cheshire and Wirral Partnership clients with Learning Disability had 112,599 contacts
(including outpatient appointments) between 2012 and 2015. In 2014 there were 27,873 contacts of
which 67% (17,208 contacts) were seen and a further 30% (8,448 contacts) were non-face-to-face
contacts including telephone and Telecare, email and text message. Overall 8% of contacts were
unsuccessful and in the majority were because the patient did not attend (4% of total contacts) or were
cancelled by the patient (2% of total contacts).

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LENGTH OF INPATIENT STAY

Between 2012 and 2015, there were 42,042 inpatient days. The total number of inpatient days has
declined from 13,235 in 2012 to 10,067 in 2014. At the point of data extraction, there had been 5,633
inpatient days in 2015; suggesting a further decline. Figure 24 shows the mean number of inpatient days
per inpatient episode per year. The mean number of inpatient days has declined from 26.9 in 2012 to
18.9 in 2014.

Figure 24: Mean length of inpatient stay, 2012-2015. Cheshire and Wirral Partnership

30.0

25.0

20.0

15.0
26.9
25.1
10.0
18.9
14.9
5.0

0.0
2012 2013 2014 2015

As expected there was considerable variation in the mean length of inpatient days by location. Pine
Lodge Children and Young People’s Therapeutic Ward had the highest number of mean inpatient days
(438.5 days) whilst Respite Wards at Primrose Avenue, Crook Lane and Thorn Heys had the lowest mean
inpatient days (4.5, 8.6 and 8.8 days respectively).

DISCHARGES

There were 5,972 discharges between 2012 and 2015. Just over four in ten (41%) were discharged by a
medical professional with an additional 16% recorded as treatment completed and 10% referred on.

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5 BOROUGH PARTNERSHIP

REFERRALS

Across 2013/14 to 2015/16, there were 1,732 referrals made to the 5bp community Learning Disability
Teams with the largest proportion made to the Knowsley Team (n=488; 28%). There was a decline in the
number of referrals made from 2013/14 (n=786) and 2014/15 (n=697).

Table 40: 5bp Learning Disability Referrals by year and team.

Team 2013/14 2014/15 2015/16 Grand Total

Halton Community LD Team 178 181 55 414
Knowsley Community LD Team 213 204 71 488
St Helens Community LD Team 155 147 61 363
Warrington Community LD Team 240 165 62 467
Annual Total 786 697 249 1732

Detailed information was provided on the source of referral which is presented in table 41 below. The
majority of referrals across the 2013-2016 period were made by social services (31%) followed by ‘other
health service/speciality’ (22%) and General Practice (20%).

Table 41: 5bp Learning Disability Referrals by referral source 2013/14-2015/16.

Source Total
Internal 246
Carer 38
Education Service 17
General Practice 341
Legal system <5
Other department if LA <5
Other health service/specialty 385
Other source 121
Police <5
Prison Service <5
Relative/friend 26
Self 9
Social Services 535
Transfer by graduation from local Child & Adolescent MH Services 5
Unknown <5
Youth Offending Team <5
Annual Total 1732

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LEARNING DISABILITY COMMUNITY TEAM CONTACTS

Across the three year period there were a total of 46,002 contacts with the four community learning
disability teams. There was a decline in the number of contacts between 2014/15 and 2015/16 has
declined from 17,499 to 10,969 but this is at least partly due to the fact that 2015/16 data is only
available until November 2015 and so does not represent a full year of data. The number of contacts
between 2014/14 and 2014/15 remained relatively stable with just a small decline from 17,534 in
2013/14 to 17,499 in 2014/15.

Figure 25: 5bp Learning Disability Community Team Contacts by year

20000
18000
16000
14000
12000
10000
17534 17499
8000
6000
10969
4000
2000
0
2013/14 2014/15 2015/16

Figure 26: 5bp Learning Disability Community Team Contacts by team 2013/14 -2015/16

18000

16000

14000

12000

10000

8000 15278
6000 12809
9583
4000 8332

2000

0
Halton Community LD Knowsley Community St Helens Community Warrington Community
Team LD Team LD Team LD Team

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LENGTH OF INPATIENT STAY

In total there were 7,302 occupied bed days between April 2013 and November 2015. Figure 27 presents
that mean length of inpatient stay per year (please note 2015/16 represents data until November 2015
and is not a full years data). The mean length of inpatient stays have increased over the three year period
from 65.3 in 2013/14 to 101.5 in 2015/16. Please note that in the case of 5BP, the average length of stay
is calculated cumulatively for each financial year and is reset in the April of each new financial year and so
the numbers presented here are not directly comparable with other providers

Figure 27: Mean length of inpatient stay, 5 borough partnership, 2013/14 – 2015/16

120.0

100.0

80.0

60.0
101.5
40.0
65.3
54.2
20.0

0.0
2013/14 2014/15 2015/16

NUMBER OF DISCHARGES BY REASON

There were 1,694 discharges across the three year period. The largest number were made by Knowsley
Community Learning Disability Team (the team which also had the largest number of contacts across the
period).

Table 42: Discharged from care, 5bp by team and year

Team 2013/14 2014/15 2015/16 Grand Total

Halton Community LD Team 165 187 122 474
Knowsley Community LD Team 176 190 122 488
St Helens Community LD Team 154 149 109 412
Warrington Community LD Team 181 81 58 320
Annual Total 676 607 411 1694

The majority of discharges were made on professional advice (72%). A further 16% were referrals which
were not accepted.

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6. RECOMMENDATIONS

Recommendations resulting from the findings of this report and relevant identified guidelines are
presented here. All the recommendations are aimed at ensuring that reasonable adjustments for people
with learning disabilities and autism are carried out in order to ensure equal access to services, as
required by the Disability and Equality Act 2010:

Empowering individuals

1.1 Ensure that people with learning disabilities in each local authority and CCG in Cheshire and
Merseyside have the opportunity to contribute to needs assessments and the development of services.
This is the second needs assessment produced across the two counties but it is vital that the data and
evidence presented here is triangulated with insights from those living with a learning disability.

1.2 Demonstrate that people with learning disabilities and autism, families and carers are involved in the
process of planning and decision making, so that their needs, choices and preferences are understood,
and services are available to reflect individual choice (IHAL, 2012, Transforming Care, 2015).

1.3 The needs of people with learning disabilities and autism should be reflected in JSNAs (Joint Strategic
Needs Assessments).

1.4 Review the quality of housing for people living with learning disability including those who are living
with family. The proportion of adults with learning disability in Cheshire and Merseyside living in their
own home is above the national average but there is little indication of housing quality.

1.5 Ensure young people with learning disabilities have access to high quality sex and relationship
education including raising awareness of sexual exploitation and healthy relationships.

1.6 Ensure that all services are actively working to reduce social isolation among people with learning
disabilities by signposting and referring to community and third sector organisations and leisure activities.

1.7 Where a parent has learning disability or autism, enable children to live with their parents (if this is
consistent with their welfare) by providing the support that they and their families need (DH and DfES,
2007). This would include ensuring equal access to services, such as parenting support and information
services and support through any court processes.

Right Care in the Right Place

2.1 Ensure strong partnership and collaborations are in place between Local Authorities and Clinical
Commissioning Groups to ensure that people with a learning disability have access to information,
advocacy, support and care as and when they need it.

2.2 Enable the pooling of resources to support and assist people held in secure accommodation to return
back to community placements (where appropriate) in their home borough.

2.3 Reduce reliance on inpatient beds in line with the Transforming Care (2015) Programme by reducing
the length of inpatients stays and ensuring that care and treatment needed by those with learning
disabilities is available in the right place at the right time.

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2.4 Ensure care managers and commissioners of packages of support consider what assistive technology
and telecare (AT&T) can do as part of a package of support (Beyer et al, 2008). Ensuring that all AT&T
plans include measures to alleviate social isolation.

2.5 Introduce routine screening for learning disability in prison and make reasonable adjustments and
develop easy read information to ensure prisoners with learning disabilities understand prison routines.

2.6 Ensure that the needs of people with learning disabilities and autism are reflected in contracting for
Improving Access to Psychological Therapies (IAPT). ‘Reasonable adjustments’ would include the
provision of longer sessions than usual, to take account of the person’s varying levels of understanding
and need (DH, 2009a).

2.7 Continue to promote annual health checks for people with learning disability at GPs and people with
learning disability, with a 90% uptake rate target (IHAL, 2012).

2.8 CCGs should work with Public Health England to ensure appropriate support is offered to individuals
with a learning disability and/or autism to improve access to screening programmes and health checks.
This should tackle issues around reasons for high refusal and non-attendance (DNA) rates and would
include the provision of ‘easy read’ materials.

2.9 Ensure that the performance of each acute provider Trust is monitored against quality indicators
which relate to the needs and experiences of patients with learning disabilities and autism.

2.10 Focus prevention strategies on areas where deaths are more avoidable, such as aspirational
pneumonia, seizures, heart disease and accidental deaths (Tyler and McGrother, 2009).

2.11 Notify the GP and the community learning disabilities team when a patient with learning disabilities
or autism is discharged after having being admitted with an Ambulatory Care Sensitive Condition (i.e. a
condition which shouldn’t need hospital care).

Workforce Development

3.1 Introduce accessible information and offer support to ensure equal access to all health and social
services. Remove physical barriers to access and make whatever alterations are necessary to policies,
procedures, staff training and service delivery to ensure that they work equally well for people with
learning disabilities, including:
3.1.1 Making all self-help and service information ‘easy to read’.
3.1.2 Ensuring support is available where required, for example in housing application processes.
3.1.3 Providing appropriate staff awareness training across all services. This will help to tackle the
issues around reasons for high refusal and non-attendance (DNA) rates for example in
screening.

3.2 Ensure that health service agreements (school nurses and health visitors) on identifying those with
learning disability and autism are built into tendering arrangements with schools and colleges.

3.3 Work collaboratively with partners to ensure that safeguarding referrals are being made
appropriately.

3.4 Improve awareness among individuals, learning disability and criminal justice professionals the
process for reporting disability related hate crime.

130
3.5 Provide training for those who work in the criminal justice system including police, court and custody
suite staff on recognising, approaching, communicating and interviewing/questioning those with learning
disabilities and autism and strengthen collaboration between health and social care providers and
partners

3.6 Strengthen collaboration between adult and children’s services to ensure that the needs of parents
with learning disabilities and their children are being met.

3.7 Consider developing sex and relationships policies in schools and services for children and adults with
learning disabilities and autism, to include staff training. This needs to be collaborative with CCGs so
healthcare staff can raise the issue and support people with appropriate contraceptive and sexual health
advice.

3.8 Explore the possibility of using newly available disability hate crime statistics to help to identify
problems relating to this issue (from the Merseyside Police SIGMA unit).

3.9 Improve employer awareness to support people with learning disability and autism in the workplace.
Use simple adjustments like making job interviews more accessible and providing assistance to
understand the ‘unwritten rules’ of the workplace (Broad, 2007).

3.10 Provide better transport solutions for people with learning disabilities and autism, organised by
councils, charities and communities in partnership, including increasing public and driver awareness of
learning disabilities and autism and improving acceptance of disabled people on public transport.

3.11 Ensure healthcare staff are trained to raise sexual health issues with people who have learning
disabilities and autism and to support them with appropriate contraceptive and sexual health advice (see
2.5 above).

3.12 Ensure there is a senior person identified in each acute hospital Trust with responsibility for patients
with learning disabilities and autism (possibly an acute liaison nurse) and that this individual puts in place
reasonable adjustments to meet the specific needs of such patients.

3.13 Ensure provider organisations, families and carers have easy access to specialist support, assessment
and intervention services from multi-disciplinary team to support any issues with challenging behaviour.

Data

Ensure that collection of all health and social care data relating to learning disability and autism becomes
more co-ordinated and systematic:

Definitions

4.1 Challenging behaviour: Agree on a standard definition across the region and maintain a register of
those with challenging behaviour (DH, 2012). Use the register to enable the development of appropriate
jointly commissioned local services for people who challenge.

4.2 Learning disability among children: introduce standard definition and collection of data on children
with learning disability rather than relying on numbers with learning difficulty (as reported in the School
Census). Liverpool City Council’s work on producing a single dataset for children and young people will
assist in this

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4.3 Asperger’s: Ensure that data on Asperger’s from Local Authority, GP practice and provider captures
those with a primary and secondary diagnosis of Asperger’s and allows for the identification of those with
a diagnosis of learning disability and Asperger’s who are not eligible for Specialist Autism Services.

Monitoring and Quality

4.4 Ensure that local authority and GP information systems across Cheshire and Merseyside allow for the
collection of comparable data which can be shared across organisations to allow the needs of the
population with learning disabilities can be truly quantified.
4.5 Ensure GP information systems record data separately on numbers with learning disability, autism
and Asperger’s syndrome and profound and multiple learning disability (PMLD), for age groups under 18,
18-64 and 65 plus, and by ethnic group and gender.

4.6 Develop the use of GP clinical systems so that data on lifestyle, screening and disease management
for those with learning disability and autism can be monitored and compared across each area and with
the general population.

4.7 In consultation with service users, providers and commissioners, develop a routine dataset
specification for use in JSNAs, needs assessments and to inform planning and policy across Cheshire and
Merseyside. This should include standard terms and definitions across the three providers (as detailed
above) to allow for easy and timely extraction of data to inform decision making.

4.8 Parental status: improve the recording of parental status among adults with learning disabilities
across GP practice, local authority and providers so that the needs of parents can be catered for including
through joint working between health and social care and maternity services.

4.9 Improve reporting of accommodation status at both LA level and across NHS organisations to ensure
individuals’ needs are recognised and all adults with learning disabilities have access to the level and
quality of support they need.

4.10 Carry out local monitoring to identify potentially avoidable hospital admissions amongst those with
learning disabilities and autism.

4.11 Within hospital IT systems ensure the identification and coding of people with learning disabilities
and autism and the ability to track episodes of care and an individual's movement within a hospital trust,
including which specialities/departments have been required.

4.12 Across all local authorities, ensure consistency of definitions and recording of numbers of people
with learning disability and autism in employment.

4.13 Make data available on numbers of people with learning disability and autism accessing
psychological therapies, so that access can be monitored.

4.14 Further investigate the needs of people with autism as data collection improves and consider a
separate needs assessment for autism and Asperger’s which uses engagement with service users, the
wider population with autism and Asperger’s to address some of the gaps in data.

4.15 Further investigate the needs of children with learning disabilities and/ or autism spectrum disorders
particularly those who are transitioning to adult services. Collaborative work with partners in health,

132
social care and education is needed to assist in the collection of a dataset on children with learning
disabilities and autism spectrum disorders to allow the health needs of this group to be fully assessed.

133
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final report of the sexuality project by CHANGE 2007-2010.
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APPENDICES

APPENDIX GUIDELINES: CARE AND MANAGEMENT

Profound and multiple learning disabilities

‘Raising our sights’ (DH, 2010a) was a report commissioned as part of the 'Valuing People Now' delivery
plan. It called for the wider development of personalised services for people with profound and multiple
learning disabilities. Although recognising existing good practice, the report highlighted prejudice,
discrimination and low expectations as obstacles to its wider implementation. There is a concern that
because of the funding crisis and the enormous pressure on social services the Government is going to
avoid committing to expensive packages of support, which people with PMLD will often need, and only
provide care in a crisis (Mencap, 2013). However, ‘Raising our Sights’ noted that a lack of resources may
restrict the speed of change, but that this shouldn't affect its direction.

Raising Our Sights (DH, 2010a) makes 33 recommendations across areas such as health, wheelchairs,
assistive technology and day activities. As well as emphasising personalisation, it says that good services
should treat the family members of the disabled person as experts, focus on the quality of staff
relationships with the person and sustain the package of care. A film accompanies the report, using the
experiences of five people with PMLD and their families to show how good services can work in practice
(Mencap 2010).

This report: There is a need for accurate locally available data on numbers with PLMD.

Autism

Fulfilling and rewarding lives (DH, 2010) is statutory guidance that focuses on the seven areas required by
the Autism Act 2009, in each case identifying what health and social services bodies are already expected
to do, and then setting out any additional requirements introduced by the strategy. The additional
requirements are focused on achieving two key outcomes:
improving the way health and social care services identify the needs of adults with autism, and
ensuring identified needs are met more effectively to improve the health and wellbeing of adults with
autism.

NICE reports on autism:

Children

The National Institute for Health and Clinical Excellence (NICE) guideline for the management and
support of children and young people with autism was published in September 2011 (NICE, 2011). The
guideline makes recommendations on the most effective ways that health and social care professionals
can provide support, interventions and help for children and young people with autism and their families
and carers, from the early years through to their transition into young adult life (up to 19).
The National Autistic Society commented that they particularly welcome NICE's recommendations on
adapting mental health interventions for children with autism and the central role for local autism teams
in the delivery and management of care. They note that 71% of children with autism have at least one co-
occurring mental health problem, while 40% have two or more (National Autistic Society 2011).
Recommendations vary in strength, from interventions that must (or must not) be pursued, which
professionals are under a legal obligation to follow, to those which professionals should follow as best
practice. NICE have said the following interventions for children and young people with autism must not
be used in any context: secretin, chelation, hyperbaric oxygen therapy. They also rule out using
psychiatric medication (anti-depressants, anti-convulsants, anti-psychotics) and exclusion diets for

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treating the core features of autism.
The guidelines relating to service organisation were as follows:

Local pathway for recognition, referral and diagnostic assessment of possible autism: Strategy group

A local autism multi-agency strategy group should be set up, with managerial, commissioner and clinical
representation from child health and mental health services, education, social care, parent and carer
service users, and the voluntary sector.
The local autism strategy group should appoint a lead professional to be responsible for the local autism
pathway for recognition, referral and diagnosis of children and young people. The aims of the group
should include:
 improving early recognition of autism by raising awareness of the signs and symptoms of autism
through multi-agency training
 making sure the relevant professionals (healthcare, social care, education and voluntary sector)
are aware of the local autism pathway and how to access diagnostic services
 supporting the smooth transition to adult services for young people going through the diagnostic
pathway
 ensuring data collection and audit of the pathway takes place.

In each area a multidisciplinary group (the autism team) should be set up. The core membership should
include a:
 paediatrician and/or child and adolescent psychiatrist
 speech and language therapist
 clinical and/or educational psychologist.

The autism team should either include or have regular access to the following professionals if they are
not already in the team:
 paediatrician or paediatric neurologist
 child and adolescent psychiatrist
 educational psychologist
 clinical psychologist
 occupational therapist.

Consider including in the autism team (or arranging access for the team to) other relevant professionals
who may be able to contribute to the autism diagnostic assessment. For example, a specialist health
visitor or nurse, specialist teacher or social worker.

Provide a single point of referral for access to the autism team.

Adults:

The NICE guidelines for adults with autism emphasise that support and care should take into account
peoples' needs and preferences (NICE, 2012). People with autism should have the opportunity to make
informed decisions about their care, in partnership with their healthcare professionals. NICE note that if
adults with autism do not have the capacity to make decisions, healthcare professionals should follow the
Department of Health's advice on consent and the code of practice that accompanies the Mental
Capacity Act. Good communication between healthcare professionals and people with autism and their
families, partners and carers is essential. It should be supported by evidence-based written information
tailored to the person's needs. If the person with autism agrees, families, partners and carers should have
the opportunity to be involved in decisions about support and care. Families, partners and carers should
also be given the information and support they need.

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Transition: Care of young people in transition between paediatric services/child and adolescent mental
health services (CAMHS) and adult services should be planned and managed according to the best
practice guidance described in the Department of Health's Transition: getting it right for young people
(http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/Publicationsand
statistics/Publications/PublicationsPolicyAndGuidance/DH_4132145)

Adult and paediatric healthcare/CAMHS teams should work jointly to provide assessment and services to
young people with autism. Diagnosis and management should be reviewed throughout the transition
process, and there should be clarity about who is the lead clinician to ensure continuity of care. All staff
working with adults with autism should take time to build a trusting, supportive, empathetic and non-
judgemental relationship as an essential part of care

In order to effectively provide care and support for adults with autism, the local autism multi-agency
strategy group (see under ‘children’ on preceding pages) should include representation from managers,
commissioners and clinicians from adult services, including mental health, learning disability, primary
healthcare, social care, housing, educational and employment services, the criminal justice system and
the third sector. There should be meaningful representation from people with autism and their families,
partners and carers.

Autism strategy groups should be responsible for developing, managing and evaluating local care
pathways. The group should appoint a lead professional responsible for the local autism care pathway.
The aims of the strategy group should include

 developing clear policy and protocols for the operation of the pathway
 ensuring the provision of multi-agency training about signs and symptoms of autism, and training
and support on the operation of the pathway
 making sure the relevant professionals (health, social care, housing, educational and
employment services and the third sector) are aware of the local autism pathway and how to
access services
 supporting the integrated delivery of services across all care settings
 supporting the smooth transition to adult services for young people going through the pathway
 auditing and reviewing the performance of the pathway
(http://www.nice.org.uk/guidance/CG123).

In addition, this NICE report (NICE, 2012) also provides guidance on interventions for autism,
interventions for challenging behaviour, interventions for coexisting mental disorders, and assessment
and interventions for families, partners and carers (http://publications.nice.org.uk/autism-recognition-
referral-diagnosis-and-management-of-adults-on-the-autism-spectrum-cg142/guidance#interventions-
for-autism).

The Autism Education Trust has produced a ‘Transition Toolkit: helping you support a child through
change’ (AET, 2012). The toolkit is a summary of common issues surrounding transition for young people
on the autism spectrum, as well as a guide to the considerations that should be taken by those
supporting them.

Recommendation from this report: There is a need for further exploration of how autism affects males
and females differently.

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APPENDIX 6

Winterbourne View

Winterbourne View hospital was a private hospital that was registered to provide assessment and
treatment and rehabilitation for people with learning disabilities. The hospital had 24 beds for patients
with learning disabilities. Most patients had been placed at the hospital under the Mental Health Act.
One of the main reasons they were placed in Winterbourne View was to manage a crisis, suggesting a
lack of local services to support people with challenging behaviour. However, many were in the hospital
for long periods - some patients were there for more than 3 years. The number of times patients were
restrained by staff at Winterbourne View hospital was very high and unacceptable. For example - a family
provided evidence that their son was restrained 45 times in 5 months. The Serious Case Review provides
evidence of poor quality care in Winterbourne View hospital. For example: some people had poor dental
health care. Families were not allowed to visit patients on the ward or in their bedrooms, which made the
abuse of patients even harder to spot.

The patients at Winterbourne View had very little access to advocacy, and patients’ complaints were not
handled properly. South Gloucestershire Council were told about safeguarding issues in Winterbourne
View but failed to identify a trend in the number of times they were contacted. A whistleblower told the
Care Quality Commission that he was worried about the way patients at Winterbourne View were being
treated, but the Care Quality Commission failed to respond to the concerns raised by the whistleblower.
The Mental Health Act Commission were told about incidents at Winterbourne View and said there was a
need to improve but did not follow up to make sure improvements had happened. 29 incidents were
reported to the police. 8 of the reported incidents concerned staff using physical restraint on patients.
The police didn’t follow up the incidents because they believed the reasons given by staff at
Winterbourne View. These concerns were not responded to until a BBC Panorama programme,
documenting the incidents at Winterbourne, was shown in May 2011.

In December 2012, the government published a response to what had happened at Winterbourne:

Transforming care: Transforming care: A national response to Winterbourne View Hospital Department of
Health Review: Final Report, December 2012.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/127310/final-
report.pdf.pdf

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ACKNOWLEDGEMENTS AND AUTHOR DETAILS

Many thanks to all those who contributed data and provided guidance and assistance for this report,
including:
Jackie Rooney, NHS England
Chris Williamson, Liverpool City Council
Colin Vose, Consultant
Paul Horwood, Sefton Council
Paul Langton and Gavin Roberts, Knowsley Council
Tracey Flute, Warrington Council
Sara Deakin and Joyce Baxter, Cheshire West and Chester Council
John HIghton, Alan Ging and Sarah Kinsella, Wirral Council
Steve Knuckey and Mark Switonski, St Helens Council
Aysha Gunal, NHS England
Ruth Waldron and Irene Byrne Watts, Mersey Care
Jennifer Prest, Neil Griffiths and Vikram Palanisamy, Cheshire West and Wirral Partnership
Mike Roscoe and Alastair Barrowcliffe, 5 Borough Partnership NHS Trust
Tracy Reed, South Sefton CCG
Ann Lincoln, Mark Whitfield and Dave Seddon, Centre for Public Health, LJMU

Author details

Jane Harris, Hannah Madden, Janet Ubido, Jane Oyston

Centre for Public Health
Liverpool John Moores University
Henry Cotton Campus
15-21 Webster Street
Liverpool
L3 2ET
Contact: j.harris1@ljmu.ac.uk

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